When/if to repeat a sleep test

[Tigerlily]

Why do you think you have narcolepsy?

Because I have virtually every symptom

[Tigerlily]

There's a little bit of improvement with your new minimum. You could try venturing to 12.5 to see how it goes.

Like Julie, I'm wondering why you think you have narcolepsy. But whatever the reason, it'll be good to discuss it with your doctor.

Yeah I was thinking of bumping it up to 12.5 and I think I will do that tonight. I think I have narcolepsy because once I started researching it I have almost every symptom. I’m definitely going to bring it up to my doctor that I see in two weeks.

[Julie]

WHAT is 'virtually every symptom'?

[Tigerlily]

WHAT is 'virtually every symptom'?

Hmmmmm, well, there's always google...but I guess I can type up a list......narcolepsy symptoms that I have

Excessive daytime sleepiness
Sleep paralysis
Falls asleep quickly
Goes into REM quickly
Vivid/intense dreams/nightmares
Hallucinations when falling asleep or waking up
Disrupted/fragmented sleep/insomia
Muscle weakness w/ strong emotion (cataplexy)
Anxiety/mood swings, feeling agitated all the time
Headaches

[Julie]

The only thing on that list that would be definitive narcolepsy-wise would be cataplexy and I wonder if you self-diagnosed that or if your doctor did (there are particular tests), and/or if you've actually had episodes where you've just e.g. fallen or slept instantaneously without warning in public, etc.

Intense dreams etc. are indicative of regular old obstructive apnea, not necessarily cataplexy, and you've never mentioned sleep paralysis before. Get your MD to refer you to a sleep specialist... we can only do so much here and you apparently need lots of attention.

[Tigerlily]

The only thing on that list that would be definitive narcolepsy-wise would be cataplexy and I wonder if you self-diagnosed that or if your doctor did (there are particular tests), and/or if you've actually had episodes where you've just e.g. fallen or slept instantaneously without warning in public, etc.

Intense dreams etc. are indicative of regular old obstructive apnea, not necessarily cataplexy, and you've never mentioned sleep paralysis before. Get your MD to refer you to a sleep specialist... we can only do so much here and you apparently need lots of attention.

Yes, I've self diagnosed so far. I already mentioned I am going to my dr in 2 weeks to talk about this.

Yes, cataplexy is unique to narcolepsy. But, it is not a required symptom, nor does it have to occur frequently, you can have it once a year and still have narcolepsy. It also doesn't have to be collapsing, it can be knees buckling, which I have had.

I know I didn't mention these symptoms before. It is because someone suggested narcolepsy in another forum I'm in and I started looking into it. I never, ever would have thought before I would have had it because I know someone with severe narcolepsy who falls asleep all the time during social events and conversations. That is the image I had of it, but it's not always like that.

Like I said, I will be pursuing this further. I've had some of this symptoms as far back as I can remember in my childhood.

[Tigerlily]

Miss Emerita....

I increased to 12.5 minimum and my numbers are getting better. But...getting more gassy, which is what happens to me with increased pressure. I'm still feeling virtually the same though. I can't WAIT to talk to my Dr. about all this and HOPEFULLY be able to be tested for narcolepsy.

First chart was Sunday, last day with 12 min. pressure. Then the last 3 nights I have been 12.5 min to 15 max

Question....what is periodic breathing? It seems like I have it often, but I'm not sure what a normal number is vs. a high number.

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[Tigerlily]

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[Tigerlily]

I mean variable breathing.....

But also, how is it different from periodic breathing? So many terms to understand.

[Julie]

Look at the Cpap Wiki - top of the page here.

[Miss Emerita]

I wasn't able to find those topics in the alphabetical list on the wiki. Here's information about variable breathing:

http://www.apneaboard.com/wiki/index.ph ... _Breathing

Periodic breathing is different. It is a stretch of breathing where how deeply you're breathing waxes and wanes in a regular pattern. Short stretches flagged as PB are absolutely nothing to worry about.

The increase in your minimum to 12.5 is helping you get better apnea treatment, I think. Improvement can come slowly, so you may yet start feeling better.

Given that you're feeling gassy, I recommend that you stay at 12.5. The gassiness may resolve itself.

Here's a good discussion of narcolepsy from a trusted web site:

https://www.mayoclinic.org/diseases-con ... c-20375497

And another:

https://www.sleepfoundation.org/narcolepsy

[Tigerlily]

Thank you! I will update in a couple of weeks after I see my Dr.

[Tigerlily]

After two denials from my insurance and an appeal from my doctors office and them still requiring more information, my insurance finally approved my repeat overnight sleep test with the MLST the next day to test for narcolepsy. I’m hopeful this will be successful and revealing. I’m definitely nervous about not being able to sleep the same there as I do at home, my mind really tends to get in the way in those circumstances!

[Julie]

Fingers crossed that you get real answers!

[Miss Emerita]

I hope you get some good answers! You might ask your doctor whether it would interfere with the test, esp re narcolepsy, if you took a prescription sleep aid.