Frustrated with recommendations by doctor

[allanri]

Hi all,

I've beed doing CPAP therapy since early May, based on the results of a lab-based sleep study that showed severe (>30 events/hour) apnea, and reduced blood oxygen levels.  But I'm still not getting the kind of sleep I think should be achievable.  My Average AHI for the last 30 days is 7.75, with CAs often outnumbering OAs about 2 to 1.  

My doctor started my on the auto setting on my AirSense 10 for Her machine, with a range of 6-12 cm H20; after I had a few weeks with this, the doctor (based on a remote analysis of the machine's reports) asked my provider to set it to a fixed pressure of 8.  A little while later, I had a titration sleep study; the outcome was to leave the pressure at a fixed 8 cm, even though my AHI was still just below 10.  

At the follow-up appointment with the doctor after the titration study, he said my results "weren't perfect" and suggested that I try doing a week or so at 8 cm, then a week at 9, then a week at 10, to see if there was a "sweet spot" somewhere in there.  He also recommended a "bumper belt", because he wanted to keep me off my back while in bed.

Now, shortly after this appointment, I left for a one-month holiday in rural Greece .. I took my machine with me, but the unavailability of distilled water prevented me from using it comfortably, so ... I didn't use it much.  But, since my return at the end of June, I've been using it pretty faithfully, or at least have tried to.  I went through the series of settings adjustments that he suggested, and 10 cm H2O seems to give the best results (at least so far).  Still not very good, AHI somewhere between 8-10 most nights.  As for the bumper belt, I had to give it up; it prevented me from switching from one side to another, which I need to, because for some reason, my arm goes numb after lying on one side for more than 20 mins or so. FWIW, I *am* wearing a cervical collar almost every night to try to force my neck/head into a position where OAs are less likely.

I finally had a follow-up appointment to discuss where I was at last week.  The doctor seemed satisfied that my AHI hit 5-7 on many (but not all) nights. I pointed out that some nights, I only used the machine for a few hours; in my frustration at not sleeping well with the mask on has caused me to rip it off and sleep without it for the remainder of the night.  He seemed to be not much bothered by that.  Indeed, in the report to my GP, which he dictated while I was there, he said I was getting "good night's sleeps most nights", "was tolerating CPAP therapy well", blah blah blah.  I sat there, rather stunned, and asked, "is this as good as it gets?".  He said, yes, he thought so.  

I am not comfortable with leaving things as they are ... I am not doing well on CPAP (can't tolerate therapy for a whole night 50% of the nights that I use it), my AHI is not great, I have some daytime sleepiness that often requires a nap, and I'm concerned that I'm not getting the long-term benefits that stabilized blood-oxygen levels, etc. offer.  I'm particularly concerned about my CAs; on most nights, they outnumber my OAs.

I could try going back to my GP and getting a referral to another doctor, but I don't know that I want to go through the whole process (initial sleep study, analysis, titration, follow-up, etc.) again.  

I'm considering just getting an ASV machine myself and self-treating.  Wondering what the thoughts are on that? Is it something that is particularly NOT recommended one do one's self?

(I've added some screen shots of my SleepyHead info for the past week.  Since seeing the doctor, I thought I might try the automatic setting on my machine for a few nights to see if it improved anything ... it didn't ... I'm back to 10 cm.  Also included the stats page.  Note there were two periods where I didn't use the machine ... most of the month of June, while I was in Greece, and last weekend, while I was at a cabin on a lake with no power near the bed to run the machine.)

Thanks for your thoughts,
Allan

[Sleeprider]

Read this thread, then let's talk. http://www.apneaboard.com/forums/Thread-...tral-Apnea

[allanri]

I will add that I think CPAP therapy has actually made my sleep WORSE, if you consider how many times I'm up at might making mask adjustments, or not able to get back to sleep when I wake up in the middle of the night because of the discomfort, etc.

[allanri]

Thanks, Sleeprider. 

Oy vey. It sounds like I need to persevere with working with a doctor on this. I don't (yet) have the knowledge to be able to make a cohesive argument to switch from my current form of therapy.  (Maybe I will after digesting the contents of the thread you referred me to.  And there's a lot to digest there.  Is there any way to print out an entire thread's worth of posts?  Would be much easier to read and learn from.)  Apart from this thread, is there a "primer" anywhere that talks about ASV therapy, the conditions/sleep problems for which it is indicated, and the theory behind how different ASV settings treat different sleep problems?  

And before I invest too much time in researching all this, do you have any sense of whether my concerns are valid? Are my expectations for reduced AHI/reduced CAs realistic?  

Thanks

[allanri]

P.S. Figured out how to print. So at least that problem is solved.

[Coffee Man]

Allan, is your inability to tolerate the CPAP due to the pressure settings or difficulty getting used to the mask?

[allanri]

I think it’s mainly the pressure settings.  I usually don’t have a problem starting out each night. That is to say, I’m able to fall asleep fairly easily with a mask on. However, I often find that I wake up in the middle of the night, for example, to go to the bathroom, and then I am unable to get back to sleep with a mask on. For some reason, even though I might have used the mask for several hours already, I find restarting therapy again difficult.  When this happens, it’s usually that I have trouble with the pressure during exhalation;  although sometimes I also feel like I’ve being starved for air during inhalation as well. I usually try for about 20 minutes, and if things don’t improve, I remove the mask and turn the machine off.  It’s weird, because it doesn’t happen consistently. Also, I do find that almost every night, even if I have worn the mask successfully for six or seven hours, I wake up at maybe around 6 AM, and seeing I’ve made it through most the night, I take the mask off to “reward” myself with an hour or so of comfortable sleep. 

I use exhalation pressure relief (level 2) and I rarely used the ramp feature when it was at the doctor’s prescribed level of 4. Since my last doctor’s appointment, I said ramp to start at six which is much more comfortable. I’ve surmised from the posts on this for the EPR Is possibly not help for central apneas, and I’m considering turning it off

As for mask comfort, I’m still not in an entirely happy place. I seem to get the best therapy results with a nasal mask, in spite of the fact that I’m a bit of a mouth breather. Although my sleep scores weren’t as good,  I found my full face mask somewhat more comfortable. At least for the first six weeks or so. After that, the full face mask didn’t seem to fit well, and was actually causing me discomfort around my eyes; my provider switched me to a different brand of full face mask, which I find less successful.

[sheepless]

personally IMHO your sleep doc's cavalier attitude is unacceptable. it should be unacceptable simply because you are not satisfied, but his mischaracterizing the efficacy of your therapy in reporting to your GP in the face of your stated concern and hard evidence of your ca's and 5+ ahi's borders on unconscionable.

you can change docs or be more assertive with the one you have. returning to adamantly complain about not having optimal or even workable therapy (you feel poorly, rip mask off...) should, should be enough to motivate him to work with you. you must be your own advocate. maybe there's a method to his madness. maybe there's more to be done with pressure settings and finding the right mask; maybe less the former than the latter, but if he shuts you down again, fire him and find another doc that'll work with you. we shouldn't have to fight for adequate treatment and have to go 'armed' with persuasive arguments. they're supposed to be the experts and they are highly paid for that.

we shouldn't have to but some of us have responded to this kind of lack of support and institutional runaround (doc's, dme providers, insurance red tape) by purchasing (new or) used bilevel and asv machines on our own to determine if they work better for us. I haven't done it yet but I expect (hope) the sleep docs will respond appropriately / positively to proof when we show it to them.

it's money up front but if that's what it takes... I have lousy insurance so the cost of even the most expensive machine bought online is no more and probably less than the cost of doctor appts, titration studies, deductibles, copays. even if it costs you more, it may be worth it if it reduces the hassle and speeds things up. in the end, if a different modality works better for you, it's tough to put a value on feeling better. that's easy to say, especially if cash money is tight, but they say you should be able to re-sell to get your money back if it doesn't work out (especially if you buy used).

don't accept poor service.

[allanri]

Sheepless, I agree, one shouldn’t accept poor service. In this case, I’m just not convinced I am going to get anywhere with this physician. I have to decide whether pushing him is going to get me anywhere or whether seeing someone else wouldn’t be better. 

I have written to his “patient coordinator” with my questions, specifically:

---

1. My average AHI for the last 30 days is 7.75.  Is this good enough?  Can I ever expect it to be better than this? I’m a little disappointed that my results aren’t better.
   
   
2. My average CAs/hour for the last 30 days is 4.3; my average OAs/hour is 2.7. I’m concerned about my CAs … is there anything more we can do to improve this? 
   
   
3. I think Dr. H. said in his dictated report to my GP that I am waking up feeling refreshed.  I challenged him on this; I’m not.  If anything, I am more tired now during the day now than I was when I started therapy. 
   

In short, I’m not satisfied that we’ve done all we can with my sleep issues.  Is there anything else the doctor can suggest?

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I’ll see where this gets me. I’m fortunate that I don’t have to pay for healthcare (I live in Canada), although most CPAP equipment is not covered. I will probably ask for a referral to a different sleep doctor of my current one doesn’t come through with some better advice. 

[matthewb]

Considering I started at 90 something for my initial AHI level and am now about 0.2 average over 7 days, good results are certainly achievable. Get another doctor. The one you have obviously doesn't have his patients best interests at the forefront.

Took me about 3 months to get "dialed in" and start to see consistent results, I got to under 10 pretty quickly. The trick was getting things set so I dropped under 5 and then continued to stay there.
Mask fit is something I struggled with for many months, now I have a mask that works and settings dialed in i'm feeling a lot better. I find ramp is not my thing, I feel starved for air when i first put the mask on, and the waking during the night and not getting back to sleep bit I can relate to. I still have that, but I just lie there and i do doze off and the next time i look at the clock its several hours later. There again, pressure settings can make a world of difference. I have finally got my machine set to a point where I don't "feel" it working, my breathing is just effortless and relaxed.