Getting discouraged

[tisket]

Got diagnosed from a home sleep study with severe obstructive sleep apnea back in mid January. After some research and poor treatment by the DME company (wouldn't return my calls, they just sat on my prescription for a week, I heard nothing) and insurance company (apparently they do the "rent to own" thing at inflated prices with whatever the DME decides to sell you, all goes against a large deductible anyway so effectively it is all out of my pocket) I decided to just get a copy of the prescription and get my own equipment online and skip the annoying DME company, compliance checks, etc. and have full access to choice of equipment as well as all the controls and data.

My scrip was vague ("CPAP," this is not a sleep doctor) so I bought an APAP with heated hose/humidification and a SD card, and a Swift FX nasal mask. Have worn it all night every night for two months. Have used Sleepyhead to look at my data a bit. AHI's are consistently below 5 (testing AHI was 29 or something, really bad). Pressure runs between 7 and 9 on average. No large leaks or periodic breathing.

Well, I feel worse than I have ever felt in my life. Really tired and irritable, to the point where it is affecting my relationships at work. Walking around with a real short fuse which is not good. So far CPAP therapy feels far worse than sleep apnea ever did.

Really wondering how long I can keep this up. My girlfriend also started with a bipap last November, she doesn't feel any better than before therapy (unlike me I don't think she feels worse though). A friend who started CPAP years ago said he felt fantastic two days later and doesn't understand why I don't feel great.

I have read the statistics on how many people give up in the first several weeks and then more who give up in 1 to 2 years. It seems only a very small percentage of people actually stick with CPAP and not all of them feel any better, they are doing it because they think it will prevent other health problems. Maybe it will, but it seems the price is very high.

Does anyone ever feel worse for months and then eventually feel better than before the therapy? Or is it one of those things where you will either feel a lot better pretty soon, or not at all?

Starting to think I should just go with my original plan and drop 40 pounds. The suffering involved in that would be less than what I am going through now.

[Wulfman...]

What are all of your settings and are you using software to see your nightly data?


Den

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[HoseCrusher]

Perhaps a change of focus is due...

You had problems with breathing during sleep. You are using an xPAP machine and monitoring your progress and that problem has been taken care of.

Now it may be time to expand your view to look at other possible issues...

Ask yourself what could possibly cause you to be tired and irritable? One of the causes could be sleep breathing problems, but you can check that one off the list and move on to the others.

[Julie]

Certainly losing weight will help, but as experience has shown for most who do so (apart from some with bariatric surgery who dropped over 100 lbs) their apnea does not go away, though may improve. If you use Sleepyhead, why not post a couple of graphs (no calendar plse) on imgur.com and link them to this thread so we can see what's going on.

Have you also had recent labwork to cover blood, sugar, thyroid, Vit. D and hormone levels, etc? Not everything's about OSA/Cpap, though it's tempting to think so. And if you are overweight, you may not get enough exercise which can lead to depression - not the kind mistakenly diagnosed prior to your OSA one, but the kind anyone can acquire over time. Just throwing out some ideas here, not knowing much about you otherwise. Btw, 29 is only considered moderate I believe, not terrible or severe.

Anyhow, you should feel at least somewhat better on Cpap and certainly not worse... so let us see your charts. But quit looking at stuff online that says so many (who apparently had no useful help from MDs, techs or ever found this forum) Cpap won't help ... don't look for 'permission' to quit yet, because I believe we can help, at least somewhat. But also, dropping 40 lbs will be difficult if you already feel crappy, and probably wouldn't stay off in the long run anyhow.

[palerider]

Have worn it all night every night for two months. Have used Sleepyhead to look at my data a bit. AHI's are consistently below 5 (testing AHI was 29 or something, really bad). Pressure runs between 7 and 9 on average. No large leaks or periodic breathing.

how much under 5? if you think about it, while 5 is 'acceptable' to doctors, it's still pretty crap, like being poked with a stick every 12 minutes all night long.

I'd suggest raising your minimum pressure to 8, based on the info you've presented, and post some charts with sleepyhead, give us something to go on.

[kteague]

Hopefully someone here can take a look at your data and make some suggestions. Has your girlfriend already done that here? While I don't remember feeling worse in regards to irritability, I did feel worse in regards to feeling more tired, sleepy, and utterly depleted. I guess that would make one irritable. How I'd describe what I went through was I let my guard down too soon. I had been functioning on steely determination. In my hopes the answer had arrived, I leaned into the treatment before it was ready to support me, and it felt like a nearly catastrophic collapse of my inner support systems. Once I knew I could sleep without danger, my body craved it like a drug. It was all I wanted to do. At some point I recovered enough to rejoin the world. I've read on here that the sudden end to the stress hormone surges with apnea events can make once feel tired. Give things some time to balance out for you. At the same time, make sure your theray is optimized, assess any meds you are on for side effects, determine if there are any other medical issues you need to address, consider if you might have any other sleep disorders, and make sure you practice habits conducive to good sleep. Sometimes it's a puzzle to be sorted through. Don't give up too soon. I quit cpap after about 5 months, but with some suggestions after coming here I was able to resume and succeed. Still had other health issues affecting my sense of well being, but treating my sleep apnea gave me the strength to address those, whereas before I was spiraling downward. Have you read the thread full of success stories at the top of the page? Keep in mind this forum is usually found by those struggling with their treatment. Those who succeeded without having to search for help are out there living their lives. If you go solely on the volume of problem posts here one would think this is a terribly hard thing. It can be, but I know plenty of people who are successful and have felt no need to come here. Prevention of worsening health issues including cognitive decline, high blood pressure, heart attack, stroke, and sleep that is not tormented are all good motivators for me. Stick with it long enough to figure out what the benefits are for you.

[tisket]

All of my blood tests were totally normal, normal blood pressure, normal everything. There is no question the CPAP therapy itself has made me feel a lot worse. Before, I felt tired and low energy all the time. Now, I feel "sleep deprived" as if I had only gotten 3 or 4 hours of sleep and was forced to get up by circumstances. I recognize the sensation mostly from college memories of studying late into the night before a test and having to get up without getting nearly enough sleep, or more recently, staying up too late the night before a flight that I had to get up for, rested or not.

I would be happy to post some data from Sleepyhead but I am not sure what to post. Someone said "no calendars," I am not sure what that means.

Sleepyhead seems to offer a lot of statistics and a lot of graphs, at a lot of zoom levels, I am not sure what I should be posting.

Please let me know what you want to see and I will capture it and put it on imgur.

Thanks.

[palerider]

I would be happy to post some data from Sleepyhead but I am not sure what to post. Someone said "no calendars," I am not sure what that means.

Sleepyhead seems to offer a lot of statistics and a lot of graphs, at a lot of zoom levels, I am not sure what I should be posting.

Please let me know what you want to see and I will capture it and put it on imgur.

Thanks.

only one page per day: https://sleep.tnet.com/resources/sleepyhead/shorganize
and how to post:
https://sleep.tnet.com/reference/tips/imgur

[tisket]

Thanks.

I don't seem to have a "flow limit" graph.

Here goes

[Julie]

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[HoseCrusher]

One thing you can try is to raise your minimum pressure from 4 to 6. Then adjust your ramp to start at 5. The ramp time of 5 minutes is OK.

[palerider]

ok, after looking at the graph, I'd say minimum to 7, see how that works for a couple of nights.

[tisket]

Thanks for trying to help. I set the minimum to 7.

Last night was the worst night ever. Had to turn it off around 4:30 AM so I could get some sleep.

I think I am going to put CPAP aside. I envy the people who feel better from using it. I am clearly not one of those people.

Thanks again to everyone for trying to help.

[Mogy]

Hi tisket,
I, like you, have been recently diagnosed with sleep apnea. I also feel worse when I use my machine all night. What I have found that works is to use it part of the night. I started at about 2 hours a night, and after 2 months I am up to 3.5 to 4. Since I have been doing this I have started to slowly feel better. Better than years. Your plan of losing weight also sounds like a good one. I have lost a fair amount in the last 3 months

[Pugsy]

While we don't or can't expect to feel that miracle we all read about and want immediately when we start cpap...we certainly don't expect to feel worse.

Gotta figure out why or what about cpap is making things worse.

First thing...how many times during the night do you wake up?
How long does it take you to fall asleep at the beginning of the night?
If you wake often during the night how long to go back to sleep?
If you wake often during the night any idea why?
Do you take any medications of any kind for any reason? If so...what are they?

I do know one person who has written a really good blog about her initial bad experience with cpap. You aren't alone.
In her case the cpap use made her already fragile sleep worse.
http://adventures-in-hosehead-land.blog ... er_19.html