Cheyne Stokes questions and my graph

General Discussion on any topic relating to CPAP and/or Sleep Apnea.
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Pugsy
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Re: Cheyne Stokes questions and my graph

Post by Pugsy » Wed Sep 17, 2014 8:07 am

Well crap, you get to a doctor and she's one of those who likes to play God.
Damn.

I was so hoping that wouldn't happen. Sigh.

What mask do you wish to try that your DME is being a butthead about?

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Re: Cheyne Stokes questions and my graph

Post by zeropoint101 » Wed Sep 17, 2014 8:44 am

I don't have anything specific in mind, and really have no idea. I told them I wanted a full face mask, but that's all I said. I assumed I'd be going into a store or showroom type place where they had different styles and I could try them on, but it was just this little office where he just handed me one particular size of the simplus mask and it was basically "here's your mask". When I even asked about just trying on a different size because it felt small to me, he just said no. It was just a small office with a couple rooms and some cubicals and from what they told me on the phone, it sounds like they only carry ONE kind of full face mask. I used to deliver pizza to a couple of medical supply places and they were store-like settings, much larger, and had various brands and style of things out on shelves and such and I thought that's what this would be. Plus I see everyone in the forums saying "I tried this one and that one at my DME and I liked this one." They said I could exchange the mask ONCE within the first 30 days if the first one wasn't working, but if they only have one style, I don't see how that helps me.

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Re: Cheyne Stokes questions and my graph

Post by Pugsy » Wed Sep 17, 2014 8:48 am

Are you using insurance or are you self pay? You don't have to use this DME. You can change.

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Re: Cheyne Stokes questions and my graph

Post by zeropoint101 » Wed Sep 17, 2014 12:28 pm

I'm using insurance, but I don't think my insurance will pay for another mask until 3 months is up.

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Re: Cheyne Stokes questions and my graph

Post by Jay Aitchsee » Wed Sep 17, 2014 1:10 pm

zeropoint101 wrote: where he just handed me one particular size of the simplus
The nice thing about the Simplus is that you can buy just the cushion, if you want to try another size. Much cheaper if you have to buy out of pocket. I believe our host (cpap.com) carries the cushion for about $40.

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Re: Cheyne Stokes questions and my graph

Post by Pugsy » Wed Sep 17, 2014 1:27 pm

Do you absolutely just HAVE to use a full face mask?
Can you normally breathe through you nose just fine or do you have significant nasal congestion that you can't get cleared up to the point you can breathe through your nose with mouth shut.
The reason I ask...I can give you a nasal pillow mask...free. I have a brand new Respironics Nuance you can have if you think you could maybe use it. If you simply can't ever breathe through your nose though...no sense going there.
I don't have many full face masks though...very short on those right now but I might have one and if I knew what other masks you were interested in then I could check to see if I maybe had one....free.

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Re: Cheyne Stokes questions and my graph

Post by zeropoint101 » Fri Sep 19, 2014 6:52 pm

Hey, I had a sort of crash and burn both mentally and physically from all this and some other stuff going, so I'm sorry I haven't responded. Nothing too serious or anything. Just don't feel good and stressed out. It happens to me sometimes. Anyway, I do get congested often so I think I do need a full face mask. And thank you so much for the offer of the mask. It's incredibly generous. I'm not sure at this point if the mask is the problem, so I'm going to wait. If that ends up being the problem later and the offer still stands at the time, that would be really helpful. I'm about to crash for the night, but I wanted to check in briefly since I'd been gone a couple days. Hopefully I'll come up with some other ideas on all this when I recover a little more over the next few days. Hope you're doing well.

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Re: Cheyne Stokes questions and my graph

Post by zeropoint101 » Thu Sep 25, 2014 1:47 am

Hi Pugsy. Just wanted to check in briefly since you've spent so much time helping me. It's been a long, hard road so far figuring this all out and I've decided for now that I need to "get back to basics" with my health before I can begin to figure this out with the cpap problems. I've learned that both the tramadol and klonopin can strongly affect breathing in some people, I'm on a much higher dose of both of them than I realized compared to a lot of people, and klonopin in particular can also affect sleep cycles, brainwaves, and possibly muscle tone in certain areas possibly causing my throat to relax more than it should(that one I'm not sure of, but have just found bits and pieces of info that I didn't fully understand). I also had a breathing test a couple years back which showed some lung problems but I never followed up on it. Plus I need to quit smoking all the way instead of just halfway. With all that affecting my breathing, among several other things, and the fact that the machine is just making me feel way worse at the moment, I think I need to slow down and back up and deal with some more obvious things before continuing to analyze my readings and make this machine work when nothing seems to be doing it. I'm going to be finding a new primary cary who I actually trust, get a full comprehensive physical, quit smoking completely(already down to 3-4 cigs a day in a week), get off both these meds over time, and see what the new doc thinks about all that and go from there.

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Re: Cheyne Stokes questions and my graph

Post by Pugsy » Thu Sep 25, 2014 7:13 am

So are you going to continue to use the cpap machine or is it going into the closet?

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Re: Cheyne Stokes questions and my graph

Post by zeropoint101 » Fri Sep 26, 2014 2:11 pm

I need to find out how the insurance would work with this, but it's still a rental at this point and I've actually only paid $72 for one month of rental at this point so I think I'm going to take it back. If I felt I had a doctor that could tell me how to set it and REALLY look at what's going on and tell me I shouldn't do that, I'd listen, but unfortunately I don't and with all these factors affecting my breathing and sleep and over relaxation of throat muscles etc, I wonder if I'm even going to need it after getting off all this medicine, quitting smoking, and getting what may be COPD/asthma treated. If I get all that stuff treated and either get retested or just still have sleep apnea symptoms, then I may get on it again and that way I'll still have the humidifier and mask and all the stuff besides the machine, and I'll just to have get the machine again. Does that sound like a bad plan to you for a reason I'm not considering?

One other thing to note here is that every single one of my events on every night I've used it(literally every single one), even when they register as hypopneas or obstructives, the breathing pattern(and the exact place where the event registers) looks exactly the same as the graph where i showed you the centrals and cheyne stokes pattern. I stop breathing(actually still waves, just incredible small) for a few seconds, it registers an event, then I do that cheyne stokes pattern where it gradually goes up to a peak and gradually back down to almost nothing, event registers again, then repeat. I've searched for hours on this forum, others, and google, and can't find a single pattern that looks like mine for obstructive apnea. The only ones that look like mine relate to central apnea, even the events say obs. or hyp. And half the rest of the time, the waves STILL look exactly the same, but no events at all are registered. Makes me wonder if I'm even getting actually obstructed or if its just lung problems and these stupid medicines doing weird things. Anyway, I'm rambling again, but does my above plan sound reasonable?

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Re: Cheyne Stokes questions and my graph

Post by Pugsy » Sat Sep 27, 2014 8:10 am

This is the first I have seen you mention COPD/asthma/lung issues.
Depending on how severe the COPD is, that might explain the breathing pattern you are seeing.
You really need to be seeing a doctor who specializes in both lung issues and sleep issues.

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Re: Cheyne Stokes questions and my graph

Post by zeropoint101 » Sun Sep 28, 2014 12:33 pm

I don't know if it's COPD or asthma or nothing. I mentioned the breathing test to you that I did a couple years back and it just has me wondering. I hadn't even thought much of that breathing test until recently in trying to figure out all this because at the time, my doc gave me the impression it was just because I smoked. But now I wonder if it's more as past details pop in my head. I do plan to see whoever I need to see. I'm just trying to figure out the right order to do it in. I had hoped at the beginning of all this that it was "simple ordinary obstructive sleep apnea" and I would get on a PAP machine, have my settings adjusted a few times to perfect everything, and I would be good to go. But it's not going that way. Now being fully aware that I'm on two strong medications that affect my breathing, and possibly some other factors with my nervous system and muscle tone of my throat, sleeping patterns, etc., along with smoking and maaaybe other lung problems, I wonder if I'm going to even need the machine after I've dealt with that stuff. Which means I'm wondering if I should spend another $650 paying for a machine that isn't helping me now, I doubt will be figured anytime too soon with all these other factors, and I may not end up needing at all. That's the decision I'm struggling with.

I could be wrong, but I get the feeling I've... frustrated? disappointed? somehow irked you? with the last few messages about possibly putting off the cpap use for now and possibly taking back the machine for the moment. Am I wrong? I asked what you thought of the plan and you didn't answer. If you think I'm doing the wrong thing, I'd love your input. I can't promise I will agree. I have no idea. But we've had a good dialogue so far and I respect your input.

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Re: Cheyne Stokes questions and my graph

Post by Pugsy » Mon Sep 29, 2014 7:00 am

You've not irked me. I am just irked period. Especially by the doctor you saw....no help and you need help and I don't know what you you need...I just know you need help.

I doubt very seriously if 100% of the blame can be laid on your meds.
The tramadol.....I take it myself and have for 20 something years.
The Klonopin...I am not all that familiar with and would need to do some more research on it.

I couldn't tell from your plan if cpap was to be included in it or if you were going to set it aside and do something different.

I have a lot of questions about what is going on with your reports but no answers.
Like how come the first night things weren't so horrible and went downhill after that? Trouble shooting the easy stuff isn't a big deal but your situation is complicated and it frustrates me that you don't have the medical support that you need.

As for keeping on using the machine....I don't know. I understand your point of view but I also know that people are real quick to try to fix sleep apnea issues without the machine if they think that they can get away with it. I can't really say that I blame you for feeling the way that you do. My questions were mainly to try to figure out what you were planning to do.

So I am irked but not at you....I am irked at the doctor who saw you that wouldn't listen and a little bit at myself because I am frustrated because I don't know how to fix you.

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Re: Cheyne Stokes questions and my graph

Post by zeropoint101 » Tue Sep 30, 2014 8:17 pm

Ok, well that's fair enough. I'm glad I asked. I knew I was sensing something. But please don't feel bad that you don't know how to fix it. Really. That's not your job, and it's not what I want. Just advice and someone to talk to about it all when you have the time is more than enough. It's a whole other story, but I VERY MUCH know the burden of putting other's health problems on one's shoulders and it WILL break you down eventually. Just do what you can and don't stress the rest.

To be clearer, here is my plan -

A. *temporarily* discontinue use of the cpap machine. maybe returning it and then restarting the process if I do still need it later because I've only rented for 1 month at this point. Or maybe I'll keep it. Part of that depends on how the insurance will work if I return it and need it again in 6 months or what not. Part just depends on what I decide.

B. quit smoking - I'm essentially there now. I just need to get past the cravings for a week or two so I know I won't backslide, but I'm feeling pretty determined and I think I'm done for good.

C. taper off of both medications

D. find a new primary care doctor in the meantime so I have a good central support for my health team, which I do not feel I have now. I will have an appointment with someone(dont know who yet) in the next few weeks but I have a family trip coming up right away so trying to decide on the timing.

E. Get my lungs checked and get on treatment for COPD or asthma if necessary.

F. Get an overall, extensive physical to check my overall health, which I haven't done in many years, and which will include lung xrays, EKG, and I'm not sure what else yet.

G. Once I've done all that, see where my apnea is at, and deal with it from that point. If it still is a problem, find the proper specialist, get back on the machine, maybe get retested, see what my new doctors think about it all.

So the short version and reason for my plan is this.. I thought this would be simple. It's not ended up that way. I've put off a whole lot of health questions and problems for years due to frustration with doctors, mostly, and I need to make this a longer and more thorough process and start from the beginning. I actually dont mind the actual machine and mask itself all that much. There are a few inconveniences with it of course, but if it turns out that's the thing I need to feel better, I won't be trying to get out of it.

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Re: Cheyne Stokes questions and my graph

Post by Pugsy » Tue Sep 30, 2014 8:37 pm

Okay.....stick this in the list of things to do...and stick it near the top of the list. PLEASE.

Push for and get a real in lab diagnostic sleep study...and don't put it off until you are off the meds or quit smoking or whatever else you are hoping is causing whichever kind of sleep apnea you may have. Chances of the meds being the main issue...teeny tiny.
Find out for sure or not about the sleep apnea...and those centrals.

Also stick this at the very top of the list...get written full copies of the results of that home sleep study to find out EXACTLY what they did find...especially the O2 levels...O2 desats I know was part of the home study. It shouldn't take much time to get that report. It's part of your medical record and it's your right to have a copy. GET IT and don't put it off.
If you spent much time below 90% O2 level....put that in lab sleep study at the top of the list.

Oxygen starvation to your body is not something you want to let continue on a long term basis while you try all these other things. It can kill you or leave you with what I call "the stroke or heart attack that comes up short"....serious brain damage. I think I fear being a vegetable more than dying.

At most to get the copy of the home sleep study will cost a few bucks to make the paper copies...and a little time and effort on your part. There's no excuse for not getting it.

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