Should I Trust Them?? (long. bear with me)

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Should I Trust Them?? (long. bear with me)

Postby JustSomeLady » Fri Aug 17, 2012 2:07 pm

Hello! I'm new to the forum and in need of some experienced input. I was diagnosed with OSA somewhere around 2006 or so, I can't recall. I've been using the CPAP religiously ever since with mixed results. I'm kinda sorta better but not really. Some years back I needed replacement parts for the CPAP and was sent back for another sleep test. After the test I was told my pressure threshold would be upped from 12 to 14, but when the tech came to my house to replace the machine he set it at 12 again. I crossed him about this but he insisted that his orders were to set it at 12. This is completely my fault but I never fought it. I just went on and continued using the CPAP with 'Meh' results. The whole process of having to find a ride to the sleep study place and going to all these appointments just to get a measley faulty part replaced wore me down and I just couldn't be bothered.

So my CPAP malfunctioned again. It took a long time for me to muster up the fortitude to report it and when I did I found that the med supply place went out of business. So I'm back on the conveyer belt of going back to the sleep doc and they want me to have ANOTHER sleep study! Not only that but they want to put me on drugs. Some stuff called Provacil or something like that to keep me awake during the day. I *INSISTED* they replace the faulty CPAP part with the correct settings and not hold it ransom while they run me through another one of their fun-house red tape processes. I finally got my new part with the correct setting two days ago and it seems to be working. I'm not jumping up in the morning singing a new song yet but my hope is that this will finally start to bring out some improvement.

My issue is, I really really really want to blow off this new sleep study. I would prefer to wait and see what happens if my apnea finally receives the treatment it's supposed to before going back for a cumbersome study that may be unnecessary. Also I just got a call from a nurse saying that my insurance has approved me for this drug they want me to start taking. :shock: DRUGS?!? Are you kidding me? No. This all seems highly suspect to me. I don't want any of that. Not now anyway. I'm of a mind to tell them to take a hike for now, at least till I know a little more from the use of the CPAP on the correct settings but I need some educated opinions on this. Is it ok to blow all of this off? I do not want to blow my money on these drugs. That's the part that has me thinking I'm in the hands of some serious hustlers though the place I'm at comes with high commendations and certificates. Still, I feel like I'm on a factory line the way things have gone. Any impressions?

Thanks in advance,

L
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Re: Should I Trust Them?? (long. bear with me)

Postby Linda » Fri Aug 17, 2012 2:36 pm

Walk away from that mess and find a good doctor who specializes in sleep medicine. When was the second sleep study? As long as the doctor can obtain obtain the records from your sleep studies, he can follow up with you with a course of action. The reports done for those studies should indicate what the recommended pressures were, regardless of any mistake along the way since.

Are you on Medicare or some other insurance? Medicare has certain requirements and a good doctor would know that. It's possible thata sleep specialist could order you a machine, even an auto cpap machine. But whatever you do, insist on a machine that records efficacy information (how often you stop breathing while using the machine). It's an important diagnostic tool for the doctor.

Welcome to the forum! :)


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Re: Should I Trust Them?? (long. bear with me)

Postby Xney » Fri Aug 17, 2012 2:39 pm

Is it "provigil"? It's basically a stimulant to wake you up. Personally I"d want to get my PAP working like the sleep study suggests before taking any medication. It may be "wrong" to suggest it, but I'd set the machine myself if I had to.

If another sleep study will get everybody on the same page, it may be worth it for that reason. However, it sounds like your doctor/clinic/DME just can't get on the same page. I'd get a good doctor, one who does sleep medicine. :|
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Re: Should I Trust Them?? (long. bear with me)

Postby JustSomeLady » Fri Aug 17, 2012 3:03 pm

Thank you everybody. The second sleep study was in 2009 and yes the drug is called Provigil. If I have a real issue that requires the use of this drug then I guess I don't mind taking it but it all seems like a cursury gesture to me. I mentioned the setting issues and the doctor said that the setting of 12 to 14 wasn't really all that big of an issue. Really? Then why all these studies and tests? This is a teaching hospital and I nearly have to kiss this doctor's pinky ring just to get in to see him. The sleep study lab seems legit. They're very thorough and professional there and I feel like I can trust the diagnostic integrity of the results. I have a pretty low opinion of the doctor who tallys those results.
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Re: Should I Trust Them?? (long. bear with me)

Postby Xney » Fri Aug 17, 2012 10:24 pm

There can be a huge difference between 12cm and 14cm if you need 14, just saying. One could be AHI = 8 and the other AHI = 2.
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Re: Should I Trust Them?? (long. bear with me)

Postby JustSomeLady » Sat Aug 18, 2012 2:54 pm

:-k Well. Just for the sake of a public record, it has been three nights since I started using the CPAP with the new 14 setting. The first day I woke up feeling like !@#!, worse than I've felt waking up in a long time. Second day was a little better but still rough. Today I allowed myself to sleep and sleep until I was ready to get up and I'm feeling pretty good. Usually I'm ready for a nap in the middle of the day no matter how much extra I sleep but not today. If things continue to *seemingly* improve from day to day I will cancel the extra sleep study. It goes without saying I wont be taking any of those drugs either. Once all this dust settles I'm not certain what I'm going to do about those charlatons who run the sleep center. I'm thinking I will contact my insurance carrier and give them the low down and see what they say. Thanks for the feedback everybody. :-)
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Re: Should I Trust Them?? (long. bear with me)

Postby Xney » Sat Aug 18, 2012 9:47 pm

There's reasons to take the medications if you have an ailment that requires them. It's not a good idea to take them to cover up xPAP therapy which is insufficient or not working right. :|
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Re: Should I Trust Them?? (long. bear with me)

Postby chronological » Mon Aug 20, 2012 1:51 pm

I'm about to begin using my machine for the first time. But at my most recent doc visit (regular, not sleep) he mentioned ProVigil, said he very rarely prescribed it, said it was only to be considered as an adjunct to, and not a replacement for, the machine, but that he reckoned I was as prime a candidate for it as he'd ever seen. He was even willing to give me samples to try, but I told him I wanted to focus on the machine first, to try to isolate causes and treatments. (If I felt great after machine+Provigil how would I know it wasn't all down to just the machine, or just the meds). He agreed but he told me to go research it (which he knows I do anyway).

Among a bunch of stuff I found this: http://www.huffingtonpost.com/johann-ha ... 56954.html

Since my primary symptoms are ADD (diagnosed but unhelped by various meds), that all sounds excellent to me. If I detect the slightest need after trying the machine for a few months, I'll be on those pills like candy (with my doc's approval of course :-) !
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Re: Should I Trust Them?? (long. bear with me)

Postby JustSomeLady » Fri Aug 24, 2012 10:30 am

I just prefer to wait till I start taking this. It doesn't help that I keep getting phone calls about it. First from the doc, then from the nurse, then from the pharmacy and now a letter from my insurance carrier proclaiming that I've been ok'd to take this drug. It's like a processional. They don't even do that for narcotics. Seems like I'm moving to the head of the class with this and no one has even diagnosed me with anything. The litterature I'm reading on it says this drug is habit forming. I really feel frustrated because it seems like a rush.

Consequently I feel awful. Much worse since they increased the pressure though I feel like I'm sleeping soundly and my roommie can't hear snoring through my door. I'm feeling very suspicious of this new mask I got since it's slightly different from the one I had. It looks the same but the old one had a rubber flap thing that covered the holes when you inhaled and it released with exhale letting the air go out. The new mask doesn't seem to have that and makes a hissing noise the old one didn't have. I cleaned up the old one and used it last night. We'll see how it goes. In the meantime I'm still side-stepping that drug and I think I may go through with the sleep study. Initial feeling is that switching the masks helped. I feel better today.
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Re: Should I Trust Them?? (long. bear with me)

Postby CrohnieToo » Sat Sep 01, 2012 3:16 pm

You can lead a horse to water but you can't make him drink. They can't MAKE you take the Provigil. And until you are comfortable w/the idea of taking it, don't. Just don't rule it out either. It does sound like something in those first two sleep studies gave some indication that maybe you need(ed) Provigial. But - as you say and are very correct in pointing out, your pressure was never raised to 14 as it should have been after the second sleep study. And regardless of what your sleep doctor says, 2 cms difference in pressure CAN make a difference between success and blech!

On the other hand I don't think your sleep "team" (doctor and lab) are "charlatans". They sound pretty thorough and above board. Three sleep studies in 6 years are not out of line given you aren't raring to go and full of vim and vigor and feeling super rested w/your current and previous therapy. Its not the doctor's nor the lab's fault the DME provider didn't set your pressure correctly.

This is all good reason tho to remind everyone that we should ask for and receive copies of the doctor's dictated results (1-2 pages each), full scored data summary reports w/condensed graphs (5+ pages each) from each and every in-lab sleep study AND a copy of all equipment orders (scripts), pressure change scripts, etc. and keep them safely on file at home to refer to as needed. You should aways carry a copy of your current script w/you when traveling in case your PAP or accessories are lost, stolen or broken.

I started w/a Resmed S8 Elite in 2006 and purchased a Resmed S8 AutoSet Vantage out of pocket so I would have both an at-home PAP and a travel/backup PAP. In 2008 I was switched to a bi-level and insisted on the Resmed S8 VPAP Auto in March.

You have me flummoxed as to what part would have to be replaced on your Resmed S8, not just once but twice. Could you clarify that for us? And which S8 model PAP are you using, what mask have you been using and which is the new mask they gave you to use?

You really do need to know EXACTLY which brand and model PAP you are using and exactly which mask you are using including PAP pressure setting, humidity setting and mask size. Those are just the minimums you should know.
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Re: Should I Trust Them?? (long. bear with me)

Postby blueh2o » Thu Sep 06, 2012 4:32 pm

Provigil apparently works well for some. For others, not so much. It actually made me feel worse, like ten cups of coffee but still the brain fog. Definitely not a substitute for treating the cause not the symptoms.
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