Opinion please - questions

StillAnotherGuest · Post by **StillAnotherGuest** » Tue Mar 06, 2007 5:28 am

cflame1 wrote:I guess that I did make them jump. The sleep doc called me tonight and wants to set up a PSG/MSLT... with me off the fluoxetine.

Going to see if I can get to sleep tonight without it. The study's in 10 days.

Said that there is a possibility that it could be one of a couple of things (in conjunction with the OSA), not the least of which is narcolepsy.

Excellent. Persistence pays.

It sounds like the PSG, then (and for that matter, the MSLT), will be done with pressure therapy, so you had better get that CPAP/BiPAP pressure thing squared away, and do it quick. When you walk in there that night, it's gonna be REAL unlikely that they will put you on 21/14 BiPAP, so you should get used to whatever pressure they're going to use for the test. And the pressure therapy should be extended through the MSLT.

Having a family member with narcolepsy increases the chances of you having narcolepsy by 20-40 fold. On the other hand, that means the likelihood of you ending up with it increases from 0.05% to only 1-2%, so that still might not be the deal-maker, especially if you deny strange sensations immediately prior to sleep onset or awakening, and cataplexy (the sudden appearance of weakness during strong emotion thing). Narcolepsy can be tough to pin down, but the most important component of narcolepsy is probably cataplexy. Go back carefully, and consider if you ever had an episode of that.

You should also be getting a blood test to check for the genetic marker HLA-DQB1*0602, but even that, unto itself, is not totally diagnostic, since 10-20% of normal people have that, too.
SAG

StillAnotherGuest · Post by **StillAnotherGuest** » Tue Mar 06, 2007 5:41 am

cflame1 wrote:Turns out that my mother has narcolepsy, and has for awhile.

By-the-by, did your mother have a positive HLA-DQB1*0602? (You can just say DQB1, for short).
SAG

cflame1 · Post by **cflame1** » Tue Mar 06, 2007 6:13 am

By-the-by, did your mother have a positive HLA-DQB1*0602? (You can just say DQB1, for short).
SAG

It's doubtful, but I'll ask. We're looking at a lot of years ago (25-30) that she would have had the diagnosis.

cflame1 · Post by **cflame1** » Tue Mar 06, 2007 8:08 pm

SAG,
My mom's answer is that she has no idea, that it was too long ago.

StillAnotherGuest · Post by **StillAnotherGuest** » Tue Mar 06, 2007 8:38 pm

OK, then we'll see what the PSG/MSLT shows, we'll be looking at sleep latencies and REM periods. A nice history of cataplexy (like the infamous "fall down laughing"- that alone could get you the diagnosis) would make things easier, but you can also have narcolepsy without cataplexy. Of the tetrad of narcolepsy (excessive daytime sleepiness, cataplexy, hypnagogic hallucinations and sleep paralysis), it's rare to find all 4, and cataplexy occurs only about 70% of the time.

In looking back for the REM-related symptoms (cataplexy, hallucinations, sleep paralysis), start before you began taking fluoxetine. People who are fluoxed can't cataplex.

BTW, in the first study, you stated you weren't on fluoxetine, and there wasn't any REM at all, which would tend to draw attention away from narcolepsy. However, an important question would be, were you on any REM-suppressing anti-depressants at the time of the first study?
SAG

cflame1 · Post by **cflame1** » Tue Mar 06, 2007 9:40 pm

The only thing that I'd taken that night (that I can recall) is ventolin. I couldn't sleep for beans that night and they had feather pillows to boot! I don't recall them even offering me a sleeping pill.

They said that they had a hard time waking me up... though they woke me a number of times.

StillAnotherGuest · Post by **StillAnotherGuest** » Wed Mar 07, 2007 6:03 am

Well, with one clean study that is not highly suggestive of N. and nothing in the Tetrad other than the EDS, we'll have to keep an open mind here. In re

Said that there is a possibility that it could be one of a couple of things (in conjunction with the OSA), not the least of which is narcolepsy.

What was the other thing(s)? Other than the family connection (and that alone won't tip the scale), there's not a real strong case for N. here. Speaking of which, how did your mother arrive at the diagnosis of N.? Did she have a sleep study? If that workup was in 1977-1982, there weren't a lot of sleep labs then. Was there unequivocal cataplexy? If there was no PSG, MSLT, lab work (I won't even ask about hypocretin cause that didn't show up till 1998), or unusual REM phenomena - I mean, you can have Narcolepsy Without Cataplexy, but Narcolepsy Without Anything is nothing.

In your case, if we're saying that the fluoxetine was masking the REM-related symptoms and that N. has come to fruition within the last year, that's possible, but starting to be a reach.

Don't forget the rest of the homework assignment, which was check on the alpha intrusion

There's a possibility of aching joints

and assess the asthma with peak flow measurements. The asthma and/or its treatment have to be considered as a major contributor to the poor sleep efficiency. Maybe even drag the Peak Flow Meter to the sleep study.

And be doing the CBT.
SAG

cflame1 · Post by **cflame1** » Wed Mar 07, 2007 6:27 am

Peak Flow meter... don't have one, and have never owned one.

From the way that she tells it, she was sleeping all of the time, and her doctor at the time came up with the diagnosis. For all that I know it may have even been earlier than 25 to 30 years ago.

Excuse my spelling, but he said that it could also be ideopathic hyposomnia. Whatever that means.

I still need to find an actual RT at the doc's office. The lady that I keep talking to, doesn't really seem to understand some of the terms that I ask about, and I don't understand them enough to explain them to her.

Ok... CBT?? I know that you're not talking about computer based training here, so what's the acronym?

Hopefully something will show up, 'cause I know that even just the last two nights... I've slept like crap.

StillAnotherGuest · Post by **StillAnotherGuest** » Wed Mar 07, 2007 6:48 am

Idiopathic hypersomnia. Excessive daytime sleepiness without an identifiable cause. Which means you need a normal PSG in re: quality (normal sleep architecture, which you ain't got) and quantity (a 50% sleep efficiency leaves that one out).

CBT - Cognitive Behavioral Therapy. Non-pharmacological approach to insomnia.

From the way that she tells it, she was sleeping all of the time, and her doctor at the time came up with the diagnosis. For all that I know it may have even been earlier than 25 to 30 years ago.

SAG is ready to wave the white flag, he gives up.

cflame1 · Post by **cflame1** » Wed Mar 07, 2007 6:49 am

ahh.. yeah... me too.

Her and her diagnosis's

cflame1 · Post by **cflame1** » Wed Mar 07, 2007 7:01 pm

Ok SAG... I picked myself up a peak flow meter tonight... like I really wanted to know that my level was that much lower than normal. My numbers aren't even on the chart (that low)... and it isn't even night time yet.

StillAnotherGuest · Post by **StillAnotherGuest** » Thu Mar 08, 2007 5:26 am

How low is low (number in liters/minute)? Make sure your technique is good, too. Say, how tall and old are you (you can whisper your age) or what's your predicted "normal" peak flow? Asthma tends to be diurnal, and it's usually worse about 4:00 AM, so early morning readings are important.
SAG

cflame1 · Post by **cflame1** » Thu Mar 08, 2007 6:15 am

I just took it this morning... 300 was the best score. That was better than the first one last night. According to all of the charts that I'm seeing... it should be just under 488.

I'm 5'4" and 36 year old female.

StillAnotherGuest · Post by **StillAnotherGuest** » Thu Mar 08, 2007 7:51 pm

To interpret the peak expiratory flow rate (PEFR), we gotta take the percentage of measured vs predicted, which at 61% is fairly decreased, but we have to qualify that. PEFR can be highly variable, so the principle of "Personal Best" is employed to establish your normal baseline. This would entail measuring PEFR several times during the day for a couple weeks, and noting what the value is when your asthma is under control. From there, you can classify the severity of the asthma by checking the percentage of Personal Best: Mild >80% of PB, Moderate 60-80%, and Severe <60%. The NIH Guidelines are an excellent source of asthma information, including this Quick Reference. All the other variables are also nicely included in Stepwise Approach for Adults and Children >5 Years. Note that you should also equate frequency of symptoms to need for medications as well.

Since all we have to work with right now is the 488, it certainly means that a bit of monitoring is in order. If your really low value last night was a true value (it takes a while to get the technique down), then getting on the right medication regimen is something you must start yesterday.

And also note the most important concept of asthma management, Control vs Rescue. Asthma is controlled with long-acting medications (and that starts with inhaled corticosteroids) and the rescue inhalers handle rare flare-ups.
SAG

cflame1 · Post by **cflame1** » Thu Mar 08, 2007 7:54 pm

just another thing to talk to the pulmy/sleep doc about... isn't he lucky?? He specializes in both (sleep apnea and asthma).

The numbers... they went up a little bit this afternoon. I'm trying to get to the point that I can even talk an average.

Opinion please - questions

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