CPAPtalk.com

NotMuffy wrote: . . . Read and reflect upon these:

Treat!
Don't Treat!

I assume the double link to "pro" was intentional, in this instance?

jnk wrote:

NotMuffy wrote: . . . Read and reflect upon these:

Treat!
Don't Treat!

I assume the double link to "pro" was intentional, in this instance?

Whoops!

Actually, I would lean towards "not".

Regardless, fixed lnk tnks jnk.

NotMuffy wrote:

jnk wrote:

NotMuffy wrote: . . . Read and reflect upon these:

Treat!
Don't Treat!

I assume the double link to "pro" was intentional, in this instance?

Whoops!

Actually, I would lean towards "not".

Regardless, fixed lnk tnks jnk.

Ah. Now I'm less confused.

I thought there were quite a few studies indicating that CPAP is effective in reducing EDS associated with UARS, as well as other correlates of the disorder, such as functional somatic syndromes. Am I dreaming this up?

NotMuffy wrote:Even vitamins can create issues. For example, in one of your posts you mention taking B-supplements. Tossing down B-complex before bedtime can create significant sleep problems.

Hmmm, I take Calcium+Vit D, Biotin Forte (i.e., Vit C, Vit B1, Vit B2, Niacin, Vit B6, Folic Acid, Vit B12, Biotin, Pantothenic Acid, and Zinc), and Magnesium before bed.

I'm having trouble figuring out what exactly "B-complex" vitamins are...Are these B-complex? Do any of these mess with sleep, and if so, what do they do to it?

NotMuffy wrote: Read and reflect upon these:

Treat!
Don't Treat!

That second one reflects the fixed link. I wanted to include it on this page of the discussion. Thanks for those links, NotMuffy.

SleepingUgly wrote:I thought there were quite a few studies indicating that CPAP is effective in reducing EDS associated with UARS, as well as other correlates of the disorder, such as functional somatic syndromes. Am I dreaming this up?

I think Dr. Littner is referring to "mild OSA" in that second link rather than UARS.

I'm thinking that in some/many cases of "mild OSA" that sleep-arousability is not as salient as it is in RERA-based UARS. And in those particular "mild OSA" cases, if you have: 1) no significant hypoxemic risks, and 2) no significant sleep deterioration... then there's no compelling reason to treat that "mild OSA" IMO. Rather, managing and carefully monitoring that "mild OSA" for signs of progression probably makes sense------especially if CPAP introduces MORE sleep disturbances than untreated "mild OSA" introduced.

However, RERA-based UARS is an altogether different SDB challenge. THAT form of SDB is heavily based in arousability itself---and consequent sleep deterioration. And some UARS patients do not seem to take well to CPAP----but especially at higher pressures.

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DID you have insomnia as a problem prior to CPAP?

secret agent girl wrote:

SleepingUgly wrote:...Hmmm, I take Calcium+Vit D, Biotin Forte (i.e., Vit C, Vit B1, Vit B2, Niacin, Vit B6, Folic Acid, Vit B12, Biotin, Pantothenic Acid, and Zinc), and Magnesium before bed.

I'm having trouble figuring out what exactly "B-complex" vitamins are...Are these B-complex? Do any of these mess with sleep, and if so, what do they do to it?

Yes, there are a bunch, or a complex, of B vitamins, so any B vitamin belongs in "the complex". Some B-complex vitamins have also names as well as B(#).

I have read that the B vits can cause wakefulness and be a problem at bedtime. When I take vitamins, I do so either at breakfast or lunch. Many vits are better absorbed in combination with certain other vits, so I figure with a meal is a good idea.

I did a quick google search of Vitamin B and sleep and most of what came up was that B12 is good for sleep...

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secret agent girl wrote:I had a period of moderate to moderate-severe insomnia in the months? year or so? prior to the sleep study. It has since tapered off. I have a bad night or two every now and then.

Did you have insomnia on CPAP? Or did it seem like it would be a great night's sleep without many interruptions, but you just felt more sleepy than if you hadn't used it?

I also have this 2am "thing" more nights than not. Whether it would be considered insomnia, I'm not sure.

Hmmm...I wonder if that's a REM-related thing. Does it keep you awake for long?

If you had no EDS, why were you sent for a sleep study in the first place?

secret agent girl wrote:

rested gal wrote:Nope...not unless the person happens to have "Complex Sleep Apnea." Whole other ballgame.

Can you share some of what you know about this? I’ve done some searching, but you have at least the equivalent of a PhD in this stuff, and you explain stuff great! [Edited to add: I think I've done enough research to have a basic understanding. As I understand it, the S8 doesn't count the centrals that most definitions include as criteria for CSA, so there's no way to know in my case without another sleep study.]

rested gal wrote:I do know this... (or think I do, could be wrong! )... some people even with very severe obstructive sleep apnea think they were asymptomatic "before CPAP", but perhaps were so used to how they felt, they regarded it as "normal." They didn't know there was any "better" way to feel.

I agree with you 100%. And I am willing to take it as a working hypothesis that it may very well be true for me as well, and then gather some data to evaluate. Here’s what I came up with:
· I used the machine for almost two months
· Negligible mask leaks and no discomfort
· Smart card showed more than acceptable AHI
· And I felt consistently and significantly worse

My sleep dr was concerned and had no answers other than to suggest another sleep study with a sleeping pill. I like her and trust her AND I would like a 2nd opinion. I was also moderately impressed with Dr Krakow’s recent presentation. He puts himself forward so it was easy to find him, but he seems to specialize in PTSD and nightmare suffers, neither of which I am.

I am open to any nice suggestions (relevant ones preferred).

Secret Agent Girl, I just thought I'd let you know you're not the only one in your situation. Like you, I'm willing to take rested girl's statement as a working hypothesis, but my own data since starting CPAP and the BiPAP must also be taken into account.

I've now been at it for four solid months: Exactly two nights with less than four hours on my home machine and one of those was the second titration study.

Negligible mask leaks and no discomfort from the MASK.

Discomfort issues from aerophagia and air leaking into my eyes through my tear ducts have been largely and positively addressed by changes in therapy.

Data from both the S9 AutoSet and the PR System One BiPAP show the AHI is definitely well under control: On the vast majority of the days with both machines, my AHI is in the 0.5 to 1.5 range. With approximately 120 days of therapy under my belt, I've had six days with a machine reported AHI >= 3.0, with only one day in the last thirty. (Note 6/120 = "1/2 of one percent of the days I've been on therapy"). I have had exactly one day with an AHI above 5.0 in the last 120 days. Data from the PR System One BiPAP shows its computation of my RERA index most typically between 0.0 and 0.5 and, except for a high of 1.2 on my first night with the BiPAP, it's always been below 1.0 in the 30 nights I've been using the BiPAP. The BiPAP has yet to score a Flow Limitation. On the S9, I don't think I ever had my Flow Limitation graph cross the halfway mark between "Open" and "Fully Closed"---or at least not for more than a few seconds.

Insomnia was an issue right from the start of CPAP. But as a tenured college professor with classes starting late in the day, I had the luxury of being able to sleep late when I needed to: So until Dec. 30, I was averaging about 7 hours of sleep per night---all with the mask on. And I had functioned for my entire adult life on roughly 7 hours of sleep---that was interrupted by both mild to moderate insomnia (at times) and apnea (clearly in at least the last two or three years before my diagnosis and maybe more).

And yet my daytime functioning during my first three months of therapy literally plummeted: I went from being able to cope--- most of the time reasonably well---with the day-to-day responsibilities of my life and not ever worrying about falling asleep at the wheel to resigning from several committees at work, declining work assignments where I could, not functioning at home, and telling my husband that he had to drive me to and from work because I did not feel safe driving for fear I would fall asleep at the wheel.

The switch to BiPAP a month ago made a few small, but important changes in how my body felt about xPAP therapy: When I wake up each morning I no longer feel like I've been running a marathon in my sleep. And the constant, irritating tickle in the back of my throat that was present on every single exhale while I was trying to fall asleep (or trying to get back to sleep) has disappeared as well. And the absolute worst of the daytime sleepiness and exhaustion has started to lift. So I am now finally able to start focusing some strength and effort on getting the insomnia under control (again) with the help of the excellent PA in my sleep doctor's office. In trying to consolidate my sleep cycles, she has put me on a sleep restriction regime with a maximum of six hours of sleep time; I'm averaging about 4 1/2 to 5 hours of sleep right now. Surprisingly enough, I'm feeling better with this amount of sleep than I was with an average of 7 hours of sleep I was getting last fall.

In the last month, I feel like I am slowly beginning to wake up from a very long and terrifying nightmare that started with the beginning of my CPAP therapy. But my daytime functioning remains severely impaired. But it is not as bad as it was. I now have several hours every day where I can think somewhat clearly---almost as clearly as I was thinking last June--August before I started CPAP. Prior to starting CPAP, I had an excellent short-term memory for managing the family's schedule of events, I was seldom late for meetings, and I never accidently scheduled two appointments for the same time. My short-term memory is now completely fried---I even scheduled a follow-up appointment with my PA at the exact time my first class for the spring semester meets, something that would NEVER have occurred prior to my starting CPAP. (Of course when I realized this several *days* after the fact, I called and rescheduled the appointment with the PA.) I am still far more emotional now and get upset far too easily as well. All in all, it's been a difficult four months for both me and my family; both I and they hope I will soon start to function with BiPAP as well as I was functioning with the apnea.

Now, as a concession to Rested Girl: It's quite possible that my daytime ability to think and reason last summer was impaired by the then untreated apnea; but at this point my daytime reasoning is even more severely impaired by the combination of the CPAP and the CPAP-induced insomnia than it was then. And I would gladly settle for getting back to functioning at the level I was at last summer since it was so much higher than it is now. After I manage to get back to my pre-CPAP normal (even it that pre-CPAP normal was impaired by untreated apnea), well then, maybe I will eventually start to actually see an actual quality of life benefit from continuing using my BiPAP machine every night. But the jury is still out on that one.

rested gal wrote:I didn't have any problem at all functioning in life. However, I used to get drowsy driving long stretches of interstate highway. I thought that was normal. I assumed, "Well, everyone gets a little sleepy driving on long boring stretches of interstate, don't they? That's normal. 'Five miles to the next Rest Area'...GOOD!"

I found out (after taking to CPAP like a duck to water, or rather a bird to air) that my drowsiness when driving was NOT really "normal." Can drive all day and half a night now with no drowsiness whatsoever.

When it comes right down to it, "CPAP" is not the easiest therapy in the world to "do." It's not exactly natural to try to sleep while wearing a mask on one's face. The disruptions caused by cpap equipment issues (mainly mask issues) can leave a person feeling worn out, sleepy, tired, fatigued...for the first time ever if they were "asymptomatic" before. Or feeling worse even if they did feel sleepy or tired before.

This is such a good point about people who think they are asymptomatic. Thanks for this personal example, rested gal. Many times when I read that people have very high AHI's but claim that they have no symptoms, I often wonder if maybe they have symptoms but don't realize it because they think it's normal to be drowsy while driving, for example. Or because they may have had a symptom for so long that they are tuning it out and don't think of it when someone asks if they have symptoms.

I also agree that it is quite true that PAP therapy can also CAUSE sleep problems. In my case, it does, but because the benefit outweighs the problems caused by PAP therapy, it's a net gain. However, I can easily believe that other people actually feel worse after treatment begins. To those I say, you may have to hang in there to get used to sleeping this way. It's not easy. But for many it is life-changing.