dolt,
I am sorry that you are 15 years into your journey without any good results.
This caught my eye:
(11-17-2016, 05:31 PM)dolt Wrote: i don't have a ready example as i had to have my ex gf explain it directly to my current specialist because i didn't fully understand what she was saying. but, on a consistent basis (5 to 15 minutes apart) i physically move my arms and body in some fashion that i apparently do not do when i am not wearing a cpap/bipap. i don't know if this type of activity was ever recorded in a sleep study.
It sounds like you might have PLMD or RLS in addition to severe sleep apnea, but that the untreated sleep apnea masks the PLMD.
PLMD is "Periodic Limb Movement Disorder". PLMD is a very specific kind of limb and body movement and it can trigger a lot of arousals and destroy sleep quality. PLMD is not the same as restless legs syndrome (RLS). Contrary to its name, RLS can affect other areas of the body. Usually RLS will manifest itself in the evening before bed as well as right at bedtime.
Here's the thing you need to be aware of when it comes to having both PLMD and untreated severe sleep apnea: If the untreated apnea is severe enough, then the apnea itself is disturbing the sleep so frequently that the PLMD doesn't have a chance to manifest itself---you are arousing so often to fix the respiratory problems, that the periodic limb movements don't happen because you're not in the correct stage of sleep long enough for the PLMs to occur. Once you start PAPing, however, the body is no longer constantly arousing itself to restart the breathing. So now you are in sleep long enough for the PLMs to start, and once they start, the PLMD arousals then start ruining your sleep.
Quote: ive had something in the neighborhood of 15 sleep studies performed and they all tend to show the same results.
How many studies were done WITH the CPAP/BiPAP? Do you have the summary data and summary graphs from any of the titration studies? A titration study is one where you are wearing the mask while in the lab.
If you have the statistical data from any of your
titration studies, you need to look for data on PLM arousals as well as the overall number of PLMs. It's also useful to look at the number of spontaneous arousals on both the titration sleep studies and the diagnostic ones.
Quote:Quote:Do you have any other health concerns that could affect your sleep quality?
and i do apologize for that. i just didn't want to dump 10 tonnes of data on you with 1% being relevant or useful. i doubt i fully know what conditions i have that could be affecting my sleep. but i do know i have been diagnosed as having adhd, bipolar and ptsd. all of which i am being treated for. let me know if you want meds and dosages.
The medication for ADHD, bipolar, and PTSD can adversely affect your sleep cycles. Again, it is possible that when you are sleeping without the PAP, the severity of your OSA masks the sleep disruption caused by any one of these conditions OR the medication you are taking for them.
Does the doctor or doctors who are treating you for the ADHD, bipolar, and PTSD problems know you have severe sleep apnea? Do they know that you have disruptions to your sleep when you are USING your PAP that you do NOT have when you are not using your PAP?
Is your current sleep specialist aware of
all of the medication you are taking for the ADHD, bipolar, and PTSD problems? Has the sleep specialist considered whether the dosing or scheduling of those medications could be affecting your sleep when you use the PAP?
Quote:Quote:[*] When was your last sleep study?
roughly three months ago
Was it a diagnostic study without a mask? Or was it a titration study with a mask? Or both?
When was the last time you had a titration study?
Quote:Quote:[*] What are your complaint(s) with your previous providers?
there has been an overall belief that a cpap cures literally all ailments. which admittedly i was very happy to hear in the beginning. but when that does not immediately solve the problem i see a lot of deer looking into headlights...
A lot of docs are lazy. And a whole lot of docs never get around to looking at the whole person as a whole person.
What I mean by that: Docs don't talk to each other unless you make them. So the sleep doc treats the known OSA with CPAP and isn't interested in the fact that you're dealing with a bunch of other medical conditions that can destroy your sleep and are on a bunch of medications that can cause sleep problems that are prescribed by other doctors. The other doctors don't know about or care about your OSA problems since they're treating you for ADHD or bipolar or PTSD. So they'll tell you about whether those things might affect your sleep, but only if you asked them to. Because after all, they're not sleep doctors.
Quote:current provider - oh where to begin. i knew things were doing downhill immediately from the first visit. but my now ex gf made me promise i would do this because i snore so loudly so i did. he didn't seem overly interested in any of my symptoms or any impressions i had on anything really. he actually went so far as to all but call me a liar when i told him i didn't have weight issues until after i had been diagnosed with sleep apnea. im confident of this being true because it was actually one of the few appointments i strongly remember with my first provider because kind of a lot of semi memorable things happened in those 45 minutes-ish.
Sheesh.
Really---this guy does seem on the incompetent side.
Quote:but back on topic. the current dr seems pretty stumped at present. in my last visit i wrote on the back of the questionnaire you are asked to fill out about your fatigue/concentration level prior to each visit, "i am a danger to myself and others behind the wheel of a car. it is not just possible, but very likely that i will cause an accident that will harm or kill myself or others". i also made this direct statement to the nurse and then to the dr. in person. he then brought in my most recent sleep study results from using their cpap which showed that my apnea was being addressed effectively by the machine. our argument ended when i asked if my apnea being "cured" was considered a complete success if im still too tired to physically function as a human being. while my point was begrudgingly accepted, it did irk me somewhat that i had to make it to begin with. especially after making the direct quote to him noted above.
Was anything said about the number of spontaneous arousals?
Was anything said about the number of PLMs?
Was anything said about how much sleep you actually got? And how much of that sleep was Stage 1? Stage 2? Stage 3? REM?
Those are all important questions to look at, particularly since you are still in danger of falling asleep?
Has anybody suggested that you be tested for narcolepsy as well as OSA? Usually they won't do the narcolepsy test unless the OSA is well controlled by PAP
and the excessive daytime sleepiness remains a huge issue. The narcolepsy test immediately follows an in-lab PSG (with a PAP if the person has OSA), and instead of going home in the morning they keep you in the lab. They ask you to stay awake for a period of time, and then they tell you to try to take a nap (with the PAP). They repeat this process about 4 or 5 times during the day. And narcolepsy is diagnosed if the data really does show that you are falling asleep at the drop of a hat and going into REM during those naps.
As for possible recommendations for finding a good sleep doc: Given your oddball collection of symptoms and your 15 year struggle with CPAP not making you feel any better, you might do well to try to find a sleep clinic associated with a major research or teaching hospital. I personally don't have any experience with such a clinic so I can't make a personal recommendation.
. 
