Hat in hand, to present my own sad case to the Brainiacs

[brain_cloud]

Class of October 2009, I believe I started on CPAP the same day as Katie W. Titrated at 14 on 10/12/2009, I have an autoset II and rescan 3.7 software, which I have tried on all manner of settings from cpap at 10, 12, 14, to apap at 12-14, 12-15, 12-16, and many many more. No stable relationship between pressures and AI or AHI, according to me or jmp. I felt substantially better after the beginning week, peaked about 3 weeks into therapy, held pretty good for 2 months, and then began a slow decline. By the middle of February, the short-term memory and tiredness issues were substantially back to square one or nearly, it seemed to me. But there was also something new, a minor sensation of dizziness, pretty much always there when I was awake. Another important thing is I had been taking generic Adderall since August 2009, 40mg of extended release per day, raised to 80mg in February. Oh, and sertraline for a few years.

My AI on the Autoset ranged from 1.5 to 8.0, but trending somewhat up-ish over the first couple of months, thus:



A few days in March which were sharply higher (see above) led me to request a second tritration study to my sleep doctor, a beady-eyed, elderly neurologist. Here's a couple of charts--first a typical good-ish day from November, and then one of the high AHI days from March.



One thing I will mention which seems unusual. My apneas tend to happen more often in the first half of the night, which is just opposite to most of the charts I've seen here from other people. Generally, 66% or my apneas happen between during the first 4-hrs of sleep. This is the case for both machines I use, my regular Autoset and my backup machine, the Intellipap. After my second titration study (March 19), I began to get better numbers using their recommended pressure (cpap at 18; but I do use EPR set to 2). These good numbers also coincided with my discontinuing the Adderall. When I stopped the Adderall (8 days ago), the dizziness I referred to above went away. But even with me holding all factors within my control the same, my AHI numbers did not stay good. Below a chart from the recent good period, and also a worse one using the same settings.




It is frustrating that good numbers seem to be out of my control. And despite the recent better numbers, it seems they botched my second titration, but it's difficult to be sure since the summary report language is very cagey and non-comittal. Below is a comparison of the three sleep studies I've had done:




It appears I was at the highest pressure (17) for 76 minutes even though the AHI for that setting was 14.2. So why didn't they raise it higher? I was awake from 2-4am (there's a story in that, but this is already long enough) and then I slept from 4:00-5:15 (that must be the 76 minutes at pressure of 17). At 5:15 I woke up, and 3-5 minutes later, the technician comes over the intercom with "Are you finished, do you think?" even though 6am is supposed to be the wake-up time. Why would she do that if the titration wasn't finished? And then the interpreting doctor recommends 18. Is that proper procedure? If the AHI is still elevated at pressure X and you run out of time (not quite what happened here), do you then recommend pressure X+1? That's crazy.

My sleep doctor tells me he doesn't have "reading priveleges" at the hospital sleep center that I went to for all three studies, but he also doesn't appear to even read the two-page summary very closely. I sent a HIPPAA letter requesting absolutely everything from all three studies a couple of days ago.

I'm not sure where to go from here. It seems there's at least one factor that I don't have a handle on that pushes my numbers up and down at the same settings. My sleep hygiene is pretty good, and I get at least 8.2 hours of sack time on workdays and 9-ish on weekends. I've been comfortable with CPAP from day one. I try to stay off my back with mixed success. The PLM numbers in the two titration studies are worrying me a little bit. What is distressing is that I had solid improvement for a time (although not great numbers), and then it slipped away.

[scrapper]

First off........there's much to be positive about: the way you took to cpap, found a mask, learned all out your numbers........and continue to do so.........so hat in hand, BUT DON'T HANG YOUR HEAD!

Are you on any meds other then the former Adderall and serataline? Are there any other contributing medical conditions? I do think that the SSRI's and second generation anti-depression drugs make a big difference in one's ability to drive the ai/ahi down--and am thinking that maybe your meds also contribute to the same thing--and will do a little research at work tomorrow for you.

I'm hoping by bumping this back to the top, a few others will take the time to study all of your information and offer some additional help.

[brain_cloud]

First off........there's much to be positive about: the way you took to cpap, found a mask, learned all out your numbers........and continue to do so.........so hat in hand, BUT DON'T HANG YOUR HEAD!

Are you on any meds other then the former Adderall and serataline? Are there any other contributing medical conditions? I do think that the SSRI's and second generation anti-depression drugs make a big difference in one's ability to drive the ai/ahi down--and am thinking that maybe your meds also contribute to the same thing--and will do a little research at work tomorrow for you.

I'm hoping by bumping this back to the top, a few others will take the time to study all of your information and offer some additional help.

No other meds, although I may need to experiment with discontinuing the sertraline, which I have so far avoided considering, since it doubles my (already numerous) experimental matrix. Now I have to do everything both with and without the sertraline!

[kteague]

Well, will you accept observations by someone other than the brainiacs? At the risk of appearing presumptuous, here I go.

Every time I start one of these posts I cringe because I feel like readers are thinking, "Oh no, here she goes on that limb movement bandwagon again!" But since you brought it up, it's fair game, right? Not qualified to make a diagnosis, but if I were able to earn a paycheck, I'd bet my next one on your limb movements being a very big part of your continued problems. Why? 1) The marked increase from your baseline to the titration studies is not unusual in those with OSA and PLMD. 2) The large number of limb movements in your titration studies would make it difficult to get a true picture of your OSA, or to say it another way, to get a meaningful titration result. 3) PLMD seems to ebb and flow within sleep stages, within a night, and between nights. It can be influenced by meds, caffeine intake, and who knows what all else. Stands to reason to me that apneas and hypopneas could increase when the limb movements decrease, and decrease when the limb movements increase. Sure wish someone would study that.

Can you correlate what meds you were on at the time of these tests? If any one of your meds could be actually causing the limb movements, I'd first figure out how to address that, based on if the med was necessary to life, health, or well being. The meds to address PLMD are serious business, and I would not casually add a med to counter a side effect of another one unless there was no other choice. Or the movements could be independent of your meds. I would be concerned that until you figure this out and address the limb movements, it will be hard for you or your medical team to really know what you're up against with the OSA. Guessing you've got one more study in your future - with limb movements treated as well as possible then retitrated.

Kathy, stepping off the limb movement soapbox

[Julie]

One other point, are you aware that SSRI's will cause dizziness if used for any length of time and then abruptly stopped vs geared back very slowly? It's just what they do. I personally would not feel I was giving the Cpap a fair trial until I had been off just about all meds for a while as I think it would make sorting out other variables too difficult.

[brain_cloud]

Well, will you accept observations by someone other than the brainiacs? At the risk of appearing presumptuous, here I go.

Anyone can play, but it seems to me you are part of the inner-circle of the Central Committee, whose word is therefore law to lowlings such as myself.

Every time I start one of these posts I cringe because I feel like readers are thinking, "Oh no, here she goes on that limb movement bandwagon again!" But since you brought it up, it's fair game, right? Not qualified to make a diagnosis, but if I were able to earn a paycheck, I'd bet my next one on your limb movements being a very big part of your continued problems. Why? 1) The marked increase from your baseline to the titration studies is not unusual in those with OSA and PLMD. 2) The large number of limb movements in your titration studies would make it difficult to get a true picture of your OSA, or to say it another way, to get a meaningful titration result. 3) PLMD seems to ebb and flow within sleep stages, within a night, and between nights. It can be influenced by meds, caffeine intake, and who knows what all else. Stands to reason to me that apneas and hypopneas could increase when the limb movements decrease, and decrease when the limb movements increase. Sure wish someone would study that.

Can you correlate what meds you were on at the time of these tests? If any one of your meds could be actually causing the limb movements, I'd first figure out how to address that, based on if the med was necessary to life, health, or well being. The meds to address PLMD are serious business, and I would not casually add a med to counter a side effect of another one unless there was no other choice. Or the movements could be independent of your meds. I would be concerned that until you figure this out and address the limb movements, it will be hard for you or your medical team to really know what you're up against with the OSA. Guessing you've got one more study in your future - with limb movements treated as well as possible then retitrated.

No, I definitely think PLMD is plausible, what with the sertraline angle, the numbers on the two titrations, and I think it might make sense of some of the heart rate up-and-downiness of my oximetry data, and my sleep doc actually said we might have to do something about PLM after the first titration. But then he forgot about it.

I don't really have a "medical team", I don't think. It's just me and ole beady eyes, and the techs down at the sleep lab who are just itchin to get home early if at all possible, and the faceless herr doktor interpreter of the data who writes the reports. A team like that; I don't see us making the playoffs this year.

[OldLincoln]

"It's always going to be something with you, isn't it"? [Meg Ryan] Should I call you Joe?

[billbolton]

Your Limb Movements seem to have increased very significantly from your baseline sleep study..... I'd be taking a close look at what impact THAT has on the rest of your treatment experience!

Cheers,

Bill

[brain_cloud]

"It's always going to be something with you, isn't it"? [Meg Ryan] Should I call you Joe?

Your chick-film references are lost on me. Stick to the classics like Adam Sandler and the Mad Max trilogy, and I'll be able to follow better.

[kteague]

Anyone can play, but it seems to me you are part of the inner-circle of the Central Committee, whose word is therefore law to lowlings such as myself. .

Oh boy, you're in bigger trouble than we thought! We gotta get your brain out of the clouds! All I know is what I've learned from others here and from my personal journey with the limb movement affliction. Yeah, I consider it an affliction. With the CPAP, treating OSA seemed achievable if I was just willing to keep jumping thru hoops till I reached the end of my obstacle course. I had some control over my success. With PLMD, I feel at the mercy of fickle meds. We tend to learn a lot when we are desperate to find some tidbit to help our sorry state, which in my case is located closer to the outer perimeter of left field.

At least you are still able to have a sense of humor about things. Hope you and your rag-tag team surprise even yourselves with a show stopping performance that leaves you the winner.

[jweeks]

Brain_Cloud,

I wonder if a 2nd opinion might be valuable? What comes to mind is a different sleep doctor and a different sleep lab. Preferably a sleep lab at a hospital or cardiac care center. What I see in your numbers is that you are having some really long events, such as several in the 40 second range. I wonder if something else is going on in addition to apnea, such as needing a more advanced machine that actively forces you to breathe.

The reason that I suggest this is due to a curious experience that I recently went through after changing to a new machine. I set the new machine on auto mode. Despite having great AHI numbers, I felt crappy. After a week, I went back to the fixed settings that I had on the old machine. Despite the AHI being the same, I suddenly felt much, much better, back to being my old self. It appears that sometimes the numbers do not tell the whole story, and that is were a high calibre doctor with lots of experience comes in handy.

-john-

[OCSleeper]

OK...but you asked, so I'm telling.

You don't seem to be entering sleep stage 3/4 at all(?), and your REM latency seems quite high. So there IS a sleep architecture problem, no? A look at the oximetry with a hypnogram might be helpful to see what's behind the high number of arousals. This might tell us if the PLM's go away with higher pressure.

The adjustment of +1cm by the doctor is a guess. That last sleep study seems quite flawed. The reason for the low sleep efficiency might also be telling. The lack of stats for the sleep levels, early wake-up (especially with the low sleep efficiency), and failure to titrate at a higher number with events still occurring all suggest the need for another study.

I would press for another titration, but with a Bi-Level. (You may need more ventilation and more O2 in the blood so your brain doesn't wake you). Your pressure of 17+ certainly justifies this, combined with the fact that your events have not been resolved. Try to get a different lab (and maybe a better Doc) that knows what they're doing and have the patience to get it right.

[brain_cloud]

Thanks all. I think I will be able to negotiate a free do-over, but not sure I want to trust that same sleep center lab. And beady eyes is history. Farewell, old droog!

Meanwhile, with the only as yet unturned knob that I have under my control being the SSRI knob, that's the knob I'm going to turn. In fact, this is already day 2 of knob turning. My plan: 5 days of 50% dose (100mg), 5 days of 25% dose (50mg), then el zippo. If any interesting data comes out of this I will post it, in the interests of Science. There's very little I won't do for Science.

So first night in, totally wild looooooooong dream with amazing continuity throughout the night. It seems a band of gypsies latched onto me and were proposing to do various remodeling jobs on my house. While the head guy was sizing up the job, the rest of 'em sort of hung around the house. 15-20 of them, and naturally with a couple of semi-fetching daughters.

[OldLincoln]

"It's always going to be something with you, isn't it"? [Meg Ryan] Should I call you Joe?

Your chick-film references are lost on me. Stick to the classics like Adam Sandler and the Mad Max trilogy, and I'll be able to follow better.

You mean you haven't seen "Joe Versus the Volcano" with Tom Hanks (who suffered from a brain_cloud) and Meg Ryan who "saved him". Released in 1990 when both were kids I might add. It's a little like "The Princess Bride" in that it had a lot of big names in supporting roles: Loyd Bridges, Robert Stack, Abe Vigoda and Ossie Davis.

I thought you might have taken your handle from the movie. No offense intended.

[scrapper]

Meanwhile, with the only as yet unturned knob that I have under my control being the SSRI knob, that's the knob I'm going to turn. In fact, this is already day 2 of knob turning. My plan: 5 days of 50% dose (100mg), 5 days of 25% dose (50mg), then el zippo.

THIS IS WAY TOO FAST.............SLOW DOWN. It takes 14-21 days for the level of an SSRI to build up in your system and even longer to work it out......decreasing doses 5 days at a time is way too much of a shock to your system. Please don't crash.......and share your plans with someone you love so they can help monitor you...