14 Months on CPAP and Still Painfully Tired

Long time reader, first time poster. I am a 30 year old male, who developed sleep apnea around age 20, and after countless visits to specialists, therapy for depression, several different kinds of prescription medication - and even a sleep study at age 25, where I guess they just missed it, as my symptoms were identical to when I took my at home sleep study, at age 29, which showed an average of 11 occurrences an hour - was finally diagnosed with sleep apnea. I have been using my cpap machine every night, religiously, for the last 14 months. Everything I am saying, and will say in this post, has been gone over thoroughly with my sleep doctor, who is very nice and patient and understanding, but whose solution is always - more cpap.

Before I get into this, I have to say that there has been some improvement in my quality of life since I started using my cpap, however, it has, and continues to be EXTREMELY gradual. I basically still have all of the symptoms I had before I started using the cpap machine, just that they have lessened in severity. My biggest complaints are waking up super tired and unrefreshed, like I was held underwater all night. This is an everyday occurrence. I also wake up with a headache everyday, and it never goes away. Over the last 10 years, having a headache all day, every day, has just become a part of normal life for me. I don't even take pain killers anymore, as they really don't help. My eyes are always very sore and tired. I have big, dark circles under my eyes. My eyes always feel bruised and I wear sunglasses as often as I can (it was so bad that I used to wear my sunglasses at my desk at work). I am in a fog all day. I have become a very slow learner, and somewhat detached from reality, and the rest of the world. I feel like I could be a superstar at something, if I could only get some actual rest, but this is something that has alluded me for the last 10 years.

I don't take any prescription medication, but I do take several supplements, and am always looking for new ones to try. I don't take any supplements for sleep, because they only makes things worse (ie melatonin and valerian root only contribute to the fatigue). I only have beer a few times a month, if that. Alcohol makes me feel awful; it instantly turns up the dial on the severity of my headache, makes everything dark, and makes me feel essentially like garbage after 1 or 2, so I usually just refrain altogether.

I do smoke marijuana at night to cope with the madness that is sleep apnea (in the 9 years I was living with untreated sleep apnea, 'the madness' is what I called my condition, as I didn't know what it was at the time, and to a certain degree, it drove me mad). I know some people might be against this, but I had quit in the past, and am not against quitting whatsoever, but the symptoms can be a heavy burden to carry, especially since I have been dealing with them since I was 20, and I am now 30. I quit for about 2 years when I was in the military, and my symptoms did not improve, at all. This is why I don't think marijuana is part of the problem. But again, I am not hard headed enough to discount it entirely, I just haven't noticed any benefits from not smoking, and the sensation that comes from smoking marijuana truly does help me cope. The truth is, if I didnt have these unrelenting symptoms, I wouldn't smoke at all. I have never been a cigarette smoker, and I eat mostly organic food. I also like to hike as often as my body allows. Sometimes I force myself to go, because I know that no exercise only contributes to a lack of health, but it is hard to hike with a headache.

I don't have any real friends, and I haven't had a girlfriend since 2010. I am very lonely and depressed. I don't know what to do anymore, I am just so tired and out of it all the time. It is hard to seize the day when you wake up every day feeling like you were hit by a train and left to die on the tracks. I know this must sound dramatic, but it is my life, and I don't know of a way to describe it more accurately.

Totally open to suggestions, comments, thoughts, concerns. Please forgive me if I missed something, I will immediately put up whatever information would be helpful.

Thank you,
Alex

So....are you using available software to make sure that the cpap therapy is optimal?
https://sleep.tnet.com/equipment

Gotta start with making sure the therapy is doing its part first. Then investigate other potential causes for problems with how we feel.
While we would like to lump all our problems in the sleep apnea basket and expect the cpap machine to fix all our problems unfortunately not all of our unwanted symptoms are caused by sleep apnea and the best cpap machine in the world can't fix a problem unrelated to sleep apnea.

But first...confirm that your therapy is optimal and nothing on the software reports is standing there screaming "fix me".

If you need help understanding what you see on the software reports you can post the detailed image of one of your typical nights for member input.
Examples of what the detailed reports look like
viewtopic/t103468/Need-help-with-screen-shots.html

There is also a SleepyHead tutorial at the top of the Announcements section of the main forum page.
Will get your started with the basics.

supertiredperson wrote:I quit for about 2 years when I was in the military, and my symptoms did not improve, at all.

I would not have expected your symptoms to improve since your sleep apnea was still untreated.

Let Pugsy help you - the first step is to check whether your CPAP therapy is effective.

ChicagoGranny - totally valid observation. I should mention that I had tried quitting as recently as a few months ago, and it is now just something I do at night, to wind down, and cope with the never ending tiredness. Although, a part of me thinks it is contributing as negatively as much as I argue that it is positively.

Pugsy- thank you for your response. I've definitely seen Sleepyhead talked about before, and will install it and get it going right away.

Also, not sure if I'm responding in the correct format, there didn't seem to be a way to publicly respond to an individual post.

supertiredperson wrote:Also, not sure if I'm responding in the correct format, there didn't seem to be a way to publicly respond to an individual post.

You mean like this??

What I do is click on the reply button and then I have the blank text box in front of me.
Then I go highlight the part of the response I want to address...then I click the Quote button above the "By screen name no and so".

You can also use the quote button on the forum editor but then who said what won't be shown like this
I just highlighted the words then copied..then used the forum editor to add the quote brackets then I pasted inside the brackets.

I've definitely seen Sleepyhead talked about

I personally don't feel the need to quote the entire response that someone might make but I know some people prefer doing things that way.
Play with it to figure out what suits you.

If a thread stays on track and doesn't get sideways (which you will find many do get sideways here) I don't see the need to take up all the space with repeated quotes of an already long message.
Sometimes I won't use the quotes at all if it is plain what I am responding to. Like my first response to you. I saw no need to repeat what you said and it was fairly obvious what I was saying.

You can also go in and edit your responses if you spot something you want to correct or clarify.

Here is my Sleepyhead data, please let me know if you'd like to see anything else. There seems to be a ton of information in there. I also noticed I have leaks. I can't see how bad, but I know leaks are completely counter productive in terms of effectiveness.

Can you review the organization of the graphs please. I think I forgot to give you that link. 3pages...so be sure to read all 3 pages.
https://sleep.tnet.com/resources/sleepyhead/shorganize
We need the stuff on the left side (hide the calendar first) as well as the graphs on the right side.
From what you did show...nothing stands out screaming "fix me" but let's look at the rest of the picture.

Your image need to include all this stuff here. If you resize the graphs you can get 5 in one image. Sacrifice Flow Rate and make it smaller so that you can get the Flow Limitation graph included. We need to see that one too.
I use a different machine so that's why I have weird looking pressure lines..just ignore that part.
An example of one of my less than stellar nights in terms of leak control.

Thank you so much for all your help so far, I feel like this will give me a much more comprehensive understanding of what is going on. Right now I'm just kind of wearing the mask and crossing my fingers. I think this is the correct format for the chart.

I see you wear the Simplus mask. I too was having headaches and someone pointed out that perhaps I may be blocking my exhalation port and the headaches are caused by not releasing the carbon dioxide. I am known to sleep on my stomach with my head buried into the pillow. Your results show you have a lot of central apneas. Too high of pressure can result in those. From what I see, your pressure is overly high. Has your doctor ever talked to you about Bipap?

Thank you. That's much better.
You had a very minor short lived period of large leak happen but it's not enough to worry about.
As long as the leaks don't disturb your sleep the machine will be able to compensate well enough.

Are you waking often for any reason? If so, any idea what the reason might be?

Before going down the "centrals are caused by too high of a pressure" road we maybe need to figure out if the centrals are real or not ...like maybe they are SWJ (sleep/wake/junk) centrals.
The pressures aren't so high that bipap is warranted unless someone is having specific pressure related issues.

BTW...centrals can happen with as little as 5 cm pressure if a person is going to have pressure triggered centrals...they aren't limited to "high" pressures and I doubt the centrals in this situation have anything to do with the pressure anyway.
Not enough of them to worry about even if every one was the real deal anyway.

Jasba64,

I too am a stomach sleeper, and sleep at the very edge of my pillow, often buried in the pillow, but in a way that allows air to move freely. I've tried a cpap pillow, but it was really uncomfortable, so now I just use an old, flat pillow and it works. I'm not sure if bipap has been discussed. My next appointment isnt until December 2017. However, if I can get together enough intel to share with my sleep doctor, I'll certainly make an appointment and see what else we can do.

Pugsy,

I do seem to wake up frequently. I can't say for sure what it is, but sometimes its the hose getting wrapped around my neck when I turn my head to the other side of the pillow. Also, the air blows my nose hairs and it gets really itchy. I'm going to have to trim them. I saw another user post this and it rung a bell for me. It has only recently become an issue though. Also, I sometimes wake up in the middle of the night, or in the morning, with my bedside lamp on, and I have no recollection of turning it on.
I also think that it is sometimes the air ramping up and blowing out near my eyes. I have only ever used this one mask, and I'm not sure it's the best one for me.

Have you ever tried fixed pressure instead of the auto adjusting pressure?

Do an experiment...if you wake up during the night for any reason reach over and turn the machine off and then right back on again. This will show up in the graph lines and we can then try to figure out if those centrals are related to an awakening or not.
Some centrals are normal and don't mean anything...like sleep onset centrals. Normal to have them and not a problem unless there's a truckload of them which yours doesn't qualify for a truckload.
Also the machine doesn't know if you are awake or asleep...all it measures is air flow and sometimes we wake up and turn over or something and sort of hold our breath a little (and don't realize we are doing it) and the machine will flag a central/clear airway event when in fact it was an awake/semi awake breathing irregularity getting flagged by mistake.

Newbie question regarding supertiredpersons' charts.
Why is the machine ramping up the pressure when there are no events?
Thanks.

Mogy wrote:Newbie question regarding supertiredpersons' charts.
Why is the machine ramping up the pressure when there are no events?

Because of somethings happening that we don't see going on. The machine in auto mode responds to not only OAs and hyponeas (some specific criteria involved) but to snores and flow limitations which we may not see flagged.
These machines respond to a lot more than just OAs and hyponeas. The idea is to prevent the OA and hyponea from ever happening in the first place. Flow limitations are reductions in air flow that don't meet the criteria for a full flag like OA or hyponea. The idea is to increase the pressure when FLs are sensed so that the FLs don't get a chance to grow up and become an OA or hyponea flagged event.

There is a flow limitation graph available that might show you a little better how the pressure changes likely coincide with Flow Limitations.

Supertiredperson...can you grab a snap shot of the Flow limitation graph for the above night you posted?

Pugsy,

I believe I was initially on the fixed pressure, and when I told my sleep doctor I wasn't noticing a big difference, she switched it to the APAP. I will try the turning off/on of the machine when I wake.