The Ambien effect-in graphs

[StillAnotherGuest]

While she needs a sleep study to test for the possibility of N, she would in all likelihood presents atypically for N, even during an MSLT.

On the contrary, in looking back over the previous opus on Bev, it is seen that she presents very typically for N. She gave a history of sleep paralysis, auditory and visual hallucinations, severe and persistent EDS in the face of seemingly effective PAP therapy, severely fragmented sleep and admitted to cataplexy.

The only remaining variable was whether or not there was sleep-onset REM, which was why I wanted the sleep studies to carefully review with my own eyeballs.

And indeed, 4.0 minutes into the 8/31 study came these:



For those not in the know, the first two channels (or "squiggly lines" as we say in the business) are "REMs". The technician scored this epoch as Stage 2.

SAG

[-SWS]

While she needs a sleep study to test for the possibility of N, she would in all likelihood presents atypically for N, even during an MSLT.

On the contrary, in looking back over the previous opus on Bev, it is seen that she presents very typically for N.

I thought Bev had expressed serious doubt that she would even be able to fall asleep during a study without some type of sedative. I'm thinking any narcoleptic who can't manage to fall asleep presents atypically during their sleep study for N. I know that exact situation is not unheard of, though...

But that gets me back to wondering a little more about her possible cortisol/stress issue. Bev mentioned that she had tested HSP positive (an admittedly unscientific/inconclusive test). But IIRC she also showed somewhat atypical cardiopulmonary fluctuation by the way of HR, BPM, and SpO2 during her daytime oximety test. So hypothetically I wonder how a narcoleptic might present during the MSLT who also sustained significantly elevated cortisol/stress levels throughout the test. I suspect that test subject might feel as if they needed their Ambien to fall asleep, despite any N that they may or may not happen to have.

An NPSG followed by MSLT would serve as a good opportunity to collect multiple blood samples in a clinical setting. However, my hunch is that an HSP-positive test subject might not manage much sleep, if cortisol/stress levels were consistently elevated by the potentially "HSP-disruptive" clinical experience itself.

[StillAnotherGuest]

While she needs a sleep study to test for the possibility of N, she would in all likelihood presents atypically for N, even during an MSLT.

On the contrary, in looking back over the previous opus on Bev, it is seen that she presents very typically for N.

I thought Bev had expressed serious doubt that she would even be able to fall asleep during a study without some type of sedative. I'm thinking any narcoleptic who can't manage to fall asleep presents atypically during their sleep study for N.

Well, "IMHO", the only thing that would make this typical presentation atypical would be if Bev actually turns out to have 4 out of 4 of the tetrad (the symptoms typically associated with N., namely EDS, cataplexy, sleep paralysis, and auditory and visual hallucinations). That likelihood, at about 15%, would be a gift from God (diagnostically speaking, that is)(narcolepsy itself wouldn't be a gift from God)(or at least a very good gift, anyway)(of course, put into perspective, considering all of the other potential gifts from God, like plague, locusts, balls of fire, leprosy, etc. I imagine you could do a lot worse than N.).

An NPSG followed by MSLT would serve as a good opportunity to collect multiple blood samples in a clinical setting.

Right. Like an HLA DQA1*0602, for instance.

SAG

[-SWS]

So a narcoleptic who can't fall asleep during the MSLT without a sedative is a typical presentation of N?

Narcolepsy diagnostic criteria is listed below (note the dark red text delineating two alternative criteria categories):

Minimal Criteria: B plus C, or A plus D plus E plus G.

A. The patient has a complaint of excessive sleepiness or sudden muscle weakness.

B. Recurrent daytime naps or lapses into sleep occur almost daily for at least 3 months.

C. Sudden bilateral loss of postural muscle tone occurs in association with intense emotion (cataplexy).

D. Associated features include:

1. Sleep paralysis

2. Hypnagogic hallucinations

3. Automatic behaviors

4. Disrupted major sleep episode

E. Polysomnography demonstrates one or more of the following:

1. Sleep latency less than 10 minutes

2. REM sleep latency less than 20 minutes

3. An MSLT that demonstrates a mean sleep latency of less than 5 minutes

4. Two or more sleep-onset REM periods

F. HLA typing demonstrates DQB1*0602 or DR2 positivity.

G. No medical or mental disorder accounts for the symptoms.

H. Other sleep disorders (e.g., periodic limb movement disorder or central sleep apnea syndrome) may be present but are not the primary cause of the symptoms.

So in recap, to receive a narcolepsy diagnosis, patients would need to meet one of these two diagnostic criteria categories: 1) B plus C, or 2) A plus D plus E plus G. Since either category is considered a diagnostic minimum, some narcolepsy patients will manifest presentations from both of these diagnostic categories. Note that F (a genetic marker) and H are presently listed as consideration factors only.

But I don't know if ICSD updated the above two diagnostic criteria combinations.

[StillAnotherGuest]

So a narcoleptic who can't fall asleep during the MSLT without a sedative is a typical presentation of N?

This is an MSLT:

MSLT

This is not an MSLT:

I thought Bev had expressed serious doubt that she would even be able to fall asleep during a study without some type of sedative.

SAG

[jnk]

. . . and admitted to cataplexy. . . .

?

If you are referring to the older thread, which I may be misreading, that admission may have been clarified/retracted later:

viewtopic.php?f=1&t=35298&st=0&sk=t&sd= ... 00#p306114

viewtopic.php?f=1&t=35298&st=0&sk=t&sd= ... 15#p306241

My vote is still for MSLT, though.

[-SWS]

So a narcoleptic who can't fall asleep during the MSLT without a sedative is a typical presentation of N?

This is an MSLT:

MSLT

This is not an MSLT:

I thought Bev had expressed serious doubt that she would even be able to fall asleep during a study without some type of sedative.

SAG

Right. That's exactly what I am trying to say. Here's a direct quote from the MSLT link that you provided above:

Most people with narcolepsy fall asleep in an average of less than five minutes during the MSLT nap trials.

Narcoleptics are expected to fall asleep very quickly during their MSLT daytime naps. Then they typically manifest multiple SOREM periods or SOREMPs.

Any narcoleptic who can't manage to fall asleep at all during the MSLT (without a sedative) does not present typically for N during the sleep study. I honestly don't think Bev is going to come close to falling asleep during the MSLT based on clinically-induced anxiety or stress. I'm not saying that Bev doesn't have N or shouldn't be tested for N with a sleep study. Quite the opposite: I'm saying that an atypical inability (atypical of narcolepsy) to even fall asleep during the daytime MSLT should not dismiss the possibility of N in Bev's case. And I also think all that erratic variability in her central-nervous/cardiopulmonary data (both day and night recordings thus far) suggests a possible stress/cortisol issue for Bev as well.

[-SWS]

. . . At least I know that if I stop breathing for 12 seconds, it will nudge me to breathe. I know it does because sometimes I wake up with it kinda breathing for me. I don't mind a trial of running at straight CPAP as long as it's on this machine with a set back up rate. . . .

Bev

This may be a silly idea (not my first), but, if it is being suggested that you try straight CPAP without a back-up rate, would your wearing a pulse-ox with an alarm make you more comfortable with the idea? Just a thought.

I also think it would be a very good idea to collect another round of fixed-pressure data----specifically using the autoSV data tools and her recording pulse oximeter.

---------------------------------------------------------------------------------------------------------------------------------------------------

BTW, here's one of quite a few anecdotes kicking around out there describing Ambien helping with narcolepsy:
http://narcolepsynetwork.org/forums/ind ... #entry3425

[OutaSync]

While she needs a sleep study to test for the possibility of N, she would in all likelihood presents atypically for N, even during an MSLT.

On the contrary, in looking back over the previous opus on Bev, it is seen that she presents very typically for N. She gave a history of sleep paralysis, auditory and visual hallucinations, severe and persistent EDS in the face of seemingly effective PAP therapy, severely fragmented sleep and admitted to cataplexy.

The only remaining variable was whether or not there was sleep-onset REM, which was why I wanted the sleep studies to carefully review with my own eyeballs.

And indeed, 4.0 minutes into the 8/31 study came these:



For those not in the know, the first two channels (or "squiggly lines" as we say in the business) are "REMs". The technician scored this epoch as Stage 2.

SAG

That sleep study gave me a REM index of zero, specifically said "No REM". Don't sleep onset REMs count as REMs? And this would be the same sleep study that said my longest obstructive apnea was 86 seconds? With no centrals? And only 2 stage 1 shifts. Makes me wonder if Jason was actually watching me sleep or was on the internet playing "guest".

I asked my GP about having a 24 hr cortisol test done. He had never heard of it and was not familiar with the different levels that cortisol is supposed to be during the course of the day. He only looks at averages. As long as I fall into the "normal range" of anything, I'm doing "fine". He's pretty much a dead end as far as helping me and I have to go through him to get referrals. The sleep doctor he referred me to is another dead end. He just said that if I'm still sleepy he could prescribe daytime drugs.

What I don't like about running straight CPAP is that the back up doesn't work and even though the AHI may be good, I don't feel well the next day. I tried running straight 16 the other night, but forgot to wear the oximeter. DUh!

[-SWS]

Bev, does your insurance require a referral from your primary physician to see an endocrionlogist?

Also wondering what you and your physician happen to think about a trial with extended-release Ambien CR... hoping to sustain better sleep throughout the entire night. Ordinary short-release Ambien seems to peter out for you as serum half-life approaches.

Yes, SAG clearly believes you had one or more sleep-onset REM periods (SOREMPs) that were not scored properly during your study:

And indeed, 4.0 minutes into the 8/31 study came these:

But I am under the impression that non-narcoleptics can also manifest the occasional SOREMP or two from adequately skewed sleep-drive----based on sleep deprivation or consistently poor sleep architecture. SAG, I'm not at all confident about that last statement. Please correct me if I'm wrong about that. Thanks.

[jnk]

Finding ways to manage anxieties and stresses can be a challenge for any and all of us. But there are always new things to try along those lines. And If the doc is already prepared to manage any symptoms medically, I'm not sure what an MSLT would accomplish in the grand scheme of things beyond pointing in a direction; or screening, in the sense of ruling something out. But it still seems like it might be a good thing to do, somehow.

I throw those statements out there strictly for reasons of personal groupthink-avoidance.

[-SWS]

All good points IMHO, Jeff. Oooops! Please allow me to rephrase my previous acquiescening statement to also avoid the perils of groupthink:
<-SWS throwing a towel down in complete disgust before storming out of the room...> "This is an outrage! I vehemently disagree to disagree with every last word!"



Also, looking at the above ICSD diagnostic criteria for narcolepsy, I think it is obvious that non-narcoleptics can experience SOREMPs:

Minimal Criteria: (B plus C), or (A plus D plus E plus G)

E. Two or more sleep-onset REM periods

If only narcoleptics experienced SOREMPs, then nothing more than a single SOREMP would be sufficient diagnostic criterion for narcolepsy.

[StillAnotherGuest]

Yes, SAG clearly believes you had one or more sleep-onset REM periods (SOREMPs) that were not scored properly during your study:

Actually, SAG did not say exactly that, he said

And indeed, 4.0 minutes into the 8/31 study came these:

and

Them are "REMs".

Bev's sleep study was confounded by the use of Lexapro, a REM suppressant, so careful scrutiny is needed to search for REM (the sleep stage, different from "REMs", the eyeball thing). And when taking antidepressants, one must be alert to the presence of "Prozac eyes" (there's probably a scientific term for that, but I don't know (or really care) what it is). Prozac eyes can easily be mistaken for REM by the layperson.

I wonder if we can do a teleconference with Jason. Does he talk to internet nuts?

SAG

[OutaSync]

-SWS,

I just called Anthem, and they do require a referral. I think I would have to order a 24 hr cortisol test on line and take the results to my doctor before he would give me a referral. He doesn't do anything over the phone. I have to make an appointment and go in for everything. $$$$ Ka-ching$$$ Even for a prescription renewal or a trial of Ambien CR.

Yesterday I signed up for a clinical research trial for a Wyeth drug for osteoporosis. I'm getting a full physical with blood work, urinalysis, mamogram, bone density scans, gynecological exam-all for free, now and again in a year. I didn't qualify for the sleep substudy because I am already on CPAP. But maybe they can recommend a good sleep doctor.

Bev

[lewis12]

oh no unless you have a chronic falling asleep problem you can use a natrual method

try melatonin its natural and imo more effective than ambien

preferebly a liquid or chewable tablet of it

works wonders