Getting to the breaking point

[ddk]

When I first got my CPAP it was fantastic. Like I'd woken up for the first time in years. But then, gradually, it faded. I am still better off with the CPAP than without, by a large margin, but I'm also still extremely tired, all the time. It generally takes me most of the day just to get to a point where I'm feeling "awake" enough to do much of anything. Often I'll have to take at least one hour long nap during the day, sometimes two. Other times it doesn't matter how much I sleep, I am just plain exhausted and the day is a complete write-off.

On a "good" day, I'll be able to concentrate long enough to do something beyond sitting at the computer and refreshing web pages, while nodding off constantly. Sometimes I'll even have two or three days in a row and start feeling somewhat human again. But it never lasts.

I've tried doing sleep test after sleep test but the combination of taking around six months just to get to the sleep test, and then having it be entirely dependant on how I'm feeling that day as to whether it even works or not, and the fact that they're conducted by students who don't give a flying fuck about me and are just plain incompetent, means that I've gotten nowhere, very, very slowly. Last attempt I had, the technician didn't even understand how the machine worked and insisted that I was wrong. Not only that, but I was given a faulty mask and she insisted that there was nothing wrong with it and it was all in my head. The mask was definitely faulty. It was missing the second, inner, lining that sealed it (it was a Swift FX nasal pillow, they have two nose cones, one inner, one outer, this one was missing the inner one so collapsed and didn't seal properly).

Even then, all they test is the exact same things they tested for the last five times. None of which are helping me resolve the issues I'm having with CPAP treatment.

Combined with the fact that GP's here seem extremely reluctant to do anything other than pathology test, after pathology test, after pathology test, all of which are just repeats of the same tests, time and time again, showing the same exact results, means that I can't even move forward to any diagnosis outside of, "Do more exercise and eat better." Yeah, I would do that, if I wasn't so fucking exhausted all the goddamn fucking time.

I can't maintain work, let alone find work and 90% of my time is spent just trying to stay awake long enough to do the very basics of subsistence living. I hardly ever go out because I can't afford it and even if I could, falling asleep, being unable to hold a conversation due to sheer exhaustion, can't focus, can't even remember basic things. I've tried self-learning things but again, falling asleep, can't remember, can't focus. Even typing this out I'm struggling to stay awake to complete it.

I'm at a point now where I don't think it will ever get better. My health is deteriorating. I no longer hold out hope for any change for the better. I have nothing and no-one to support me or help me through this. I just don't know what the point is in even trying anymore.

[Julie]

Are you not using Sleepyhead? Wanna show us a couple of nights' results? When's the last time you had labwork done for Vit. D levels, hormone levels, blood sugar, thyroid?

[Wulfman...]

Your profile shows that you're using Sleepyhead software. I would think that between reading your reports and having your health checked by a doctor, you should be able to get some clues.

What specific machine? What settings? More information may help. Or, if you could post some nightly reports.


Den

.

[lilly747]

Re: Is CPAP the best option?
New postby chunkyfrog on Mon Jun 24, 2013 8:57 am

Many here have found that at pressures anywhere NEAR 20 cm, treatment is nearly impossible on a straight cpap.
Bilevel machines offer a much greater differential between inhale and exhale;
and an AUTO Bipap would be more able to provide the lowest effective pressure,
as it appears ddk has not had a titration sleep study,
I would NOT want to go back to the incompetent doctor who would do what he did.

From the sound of this thread, you have never had effective therapy. And if you are still using a straight cpap, you are not going to.......using a pressure of 20.......you need a bi-level. Does your machine even have data other than compliance??

It sounds like you are having a very hard time and I hope you find a way to make things better.

There may be health problems other than xPAP, but for sure I would find a way to get a better machine and go from there.

[ddk]

From the sound of this thread, you have never had effective therapy. And if you are still using a straight cpap, you are not going to.......using a pressure of 20.......you need a bi-level. Does your machine even have data other than compliance??

I simply don't have the option of changing machines. I got my machine through a government subsidy and there's no option of what machine I get and I can't afford to get my own.

I'm getting a lot of leaks but there's very little I can do to change that. I can't afford a new mask, I can't afford proper hose socks or hangers. All these things have an effect. Cold air is a big one which causes a blocked nose and I can't heat the hose. Mostly it's turning onto my back which I can't seem to prevent either despite trying pillows and even sleeping right at the edge so I have nowhere to turn to.

[49er]

ddk,

As one who has narcoleptic like issues in addition to sleep apnea, I so relate to your situation, especially getting the same pathology tests over and over again. Or someone like my sleep doc, who tries hard but just can't think outside the box, will suggest playing "chase the perfect med."

I would follow Julie's advice regarding blood work. Additionally, this is a long shot and may be totally unrelated to your issue but many people with narcolepsy and narcoleptic like issues have had success with a gluten free diet and eliminating foods they had food tolerances to such as dairy. Since your issues sounds similar, maybe doing something like this is worth a shot?

Just so you know, I haven't done this and want to try something first but that is my next plan of action.

49er

PS - I would also look into a ketogenic diet to see if that helps.

When I first got my CPAP it was fantastic. Like I'd woken up for the first time in years. But then, gradually, it faded. I am still better off with the CPAP than without, by a large margin, but I'm also still extremely tired, all the time. It generally takes me most of the day just to get to a point where I'm feeling "awake" enough to do much of anything. Often I'll have to take at least one hour long nap during the day, sometimes two. Other times it doesn't matter how much I sleep, I am just plain exhausted and the day is a complete write-off.

On a "good" day, I'll be able to concentrate long enough to do something beyond sitting at the computer and refreshing web pages, while nodding off constantly. Sometimes I'll even have two or three days in a row and start feeling somewhat human again. But it never lasts.

I've tried doing sleep test after sleep test but the combination of taking around six months just to get to the sleep test, and then having it be entirely dependant on how I'm feeling that day as to whether it even works or not, and the fact that they're conducted by students who don't give a flying fuck about me and are just plain incompetent, means that I've gotten nowhere, very, very slowly. Last attempt I had, the technician didn't even understand how the machine worked and insisted that I was wrong. Not only that, but I was given a faulty mask and she insisted that there was nothing wrong with it and it was all in my head. The mask was definitely faulty. It was missing the second, inner, lining that sealed it (it was a Swift FX nasal pillow, they have two nose cones, one inner, one outer, this one was missing the inner one so collapsed and didn't seal properly).

Even then, all they test is the exact same things they tested for the last five times. None of which are helping me resolve the issues I'm having with CPAP treatment.

Combined with the fact that GP's here seem extremely reluctant to do anything other than pathology test, after pathology test, after pathology test, all of which are just repeats of the same tests, time and time again, showing the same exact results, means that I can't even move forward to any diagnosis outside of, "Do more exercise and eat better." Yeah, I would do that, if I wasn't so fucking exhausted all the goddamn fucking time.

I can't maintain work, let alone find work and 90% of my time is spent just trying to stay awake long enough to do the very basics of subsistence living. I hardly ever go out because I can't afford it and even if I could, falling asleep, being unable to hold a conversation due to sheer exhaustion, can't focus, can't even remember basic things. I've tried self-learning things but again, falling asleep, can't remember, can't focus. Even typing this out I'm struggling to stay awake to complete it.

I'm at a point now where I don't think it will ever get better. My health is deteriorating. I no longer hold out hope for any change for the better. I have nothing and no-one to support me or help me through this. I just don't know what the point is in even trying anymore.

[Julie]

Well, it looks to me like you need to raise your low pressure by a bit at least, certainly try a slightly higher setting and see how it goes for a few nights, then if necessary, raise it again. I don't necessarily think you need a bilevel yet. Another thing is that your mask obviously doesn't fit well as you are getting leaks, but it may not be necessary to buy a new one at retail price... rather, you could try a liner made from an old T-shirt, as many have done here, and work on not back- sleeping and using a better pillow.

I think you're telling yourself you can't afford any help at all, which may be true, but it doesn't mean you can't access help, which would mean reaching out to people here or at some local resource to help. You sound so determined not to help yourself... anyone can make a 'free' reasonable hose cover, same for a hanger, and certainly people here would help with how to do those.
And you can also be shown how to adapt a present pillow for side sleeping, or make a new one, along with rigging something to keep from back sleeping - none of which need to cost anything.

You have decided you can't do anything to improve your situation and are jumping on the "I need a bilevel and can't afford it" train, but I don't agree that you can't help yourself or that you can't feel somewhat better once you stop telling yourself you can't. That doesn't cost anything.

Well intentioned as 49er's advice may be, I see no reason to question having narcolepsy a I think chasing a new and unfounded diagnosis out of the blue now is not going to help you.

[49er]

Well, it looks to me like you need to raise your low pressure by a bit at least, certainly try a slightly higher setting and see how it goes for a few nights, then if necessary, raise it again. I don't necessarily think you need a bilevel yet. Another thing is that your mask obviously doesn't fit well as you are getting leaks, but it may not be necessary to buy a new one at retail price... rather, you could try a liner made from an old T-shirt, as many have done here, and work on not back- sleeping and a better pillow.

I think you're telling yourself you can't afford any help at all, which may be true, but it doesn't mean you can't access help, which would mean reaching out, e.g. to Secondwindcpap.com (take a look at what they may have on a given day), or simply asking people here or at some local resource to help. You sound so determined not to help yourself... anyone can make a 'free' reasonable hose cover, same for a hanger, and certainly people here would help with how to do those.
And you can also be shown how to adapt a present pillow for side sleeping, or make a new one, along with rigging something to keep from back sleeping - none of which need to cost anything.

You have decided you can't do anything to improve your situation and are jumping on the "I need a bilevel and can't afford it" train, but I don't agree that you can't help yourself or that you can't feel somewhat better once you stop telling yourself you can't. That doesn't cost anything.

Well intentioned as 49er's advice may be, I see no reason to question having narcolepsy a I think chasing a new and unfounded diagnosis out of the blue now is not going to help you.

Sorry, I wasn't clear Julie.

I am not suggesting that a narcolepsy diagnosis be chased. But since the OP has similar type issues, it might be worth trying remedies that have helped people with narcolepsy such as a gluten free and or ketogenic diet to see if that helps. He has nothing to lose by trying them. Of course, consult with doctor to make sure there aren't contraindications for doing this.

49er

[Julie]

In another more optimistic world I might agree with you, but if the OP thinks they can't afford or access some of the things mentioned, let alone e.g. gluten free anything, I don't see them going there any time soon.

[ddk]

Are you not using Sleepyhead? Wanna show us a couple of nights' results? When's the last time you had labwork done for Vit. D levels, hormone levels, blood sugar, thyroid?

Six months ago. All was fine.

[49er]

In another more optimistic world I might agree with you, but if the OP thinks they can't afford or access some of the things mentioned, let alone e.g. gluten free anything, I don't see them going there any time soon.

Hmm, not necessarily:

https://www.google.com/#q=gluten+free+diet+budget
https://www.google.com/webhp?sourceid=c ... iet+budget

And even if the OP still feels these suggestions are unrealistic for now, he might want to revisit them in the future.

49er

[Julie]

Sleepyhead is meant to be used often, so that you can keep a close eye on what's happening and work on what might need changing (if anything were to need it based on monitoring over a small period of time such as a month or so of checking every night, every second or third night, etc). Every six months, especially for only one night at a time, is pointless unless you feel terrific all the time, have no issues at all with equipment and just want to confirm how well things are going.

[ddk]

You sound so determined not to help yourself... anyone can make a 'free' reasonable hose cover, same for a hanger, and certainly people here would help with how to do those.

Or, I've already been down that road and tried all those things and none of them have worked. But thanks for your doubt and accusations. They certainly make me feel so much better.

[Julie]

You complained about needing a hose cover, etc... what hasn't 'worked' about that, for instance? Or do you really just want a pity party?

[ddk]

Or do you really just want a pity party?

Wow. You're just not a very nice person, are you?

Welcome to ignore.