first sleep study - complete waste of time? - Yup!

[kteague]

I wouldn't automatically think narcolepsy...

With a REM latency of 6 minutes, I would.

You certainly should know. Are there (m)any instances other than with narcolepsy?

[ironhands]

I wouldn't automatically think narcolepsy...

With a REM latency of 6 minutes, I would.

You certainly should know. Are there (m)any instances other than with narcolepsy?

sleep onset REM is associated with narcolepsy, major depression, and schizophrenia. A few other psychiatric disorders as well.

I've been dealing with depression most of my life, but narcolepsy and depression go hand-in-hand, and based on the EDS as well, it's likely the correct diagnosis, although, my symptoms are relatively mild. I slept 8 hours last night and I'm still foggy after being up about 2 hours, including 2 15 min naps after my alarm went off.

It's the fact that my symptoms are so mild that may interfere with a diagnosis, or, they just go back to treating me for depression which made my sleep infinitely worse.

[Casting about in Cumberland]

Hope the Sheriff can give me some straight talk! What if I KNOW I have sleep apnea (no one has EVER wanted to bunk with me!) and your cardiologist claims you can get healthy (reverse thickened heart walls) if you use a CPAP faithfully--BUT your private insurance co. (Blue Cross/BS) won't pay because: you don't [yet] meet their arbitrary morbidity checklist? The uninsured, overnight sleep lab bill will cost $7000. (For THAT kind of money, I want to be in Bermuda for 10 days!) My regular physician agrees I need to get this machine/mask (and I can get her to write a script, betcha, betcha!) how bad off would I be to buy the equipment, out of pocket (and without the test) and trial-and-error the treatment, as most of the settings can be started low--and are automatic--etc.
Has anyone ever tried this? Is it DO-ABLE? Is it legal? Is it safe? Note: I'm NOT asking for my insurance company to help out, I just want to be pro active with my health, and these sleep labs seem like a scam to me! Thoughts? Many Thanks!

[ironhands]

using a CPAP can potentially cause harm, you'd at least need a titration to figure out the pressures. How is it that you KNOW you have it?

If the doc will write the script, you could probably safely handle an auto machine without issue.

The sleep labs are important, it's the DME that are more likely to try and scam you

The other option, that I would suggest, is having your doc lie. If the doc is willing to write the script, it's because they feel you need treatment. If they are that sure, checking in an extra box to get your insurance company to pay for it shouldn't be an issue. Have the doc administer another Epworth test and see if you magically score 25+

[lastlib]

You must, absolutely, with no excuses, demand that on any tests done on you that the raw data be transmitted to you at the same time it goes to any other person including any Doctor. Under no circumstances should you compromise on this issue. It is your body and you or someone on your behalf is paying for any tests. NO ONE has a greater right than you to those tests. If they send it to someone else make it your business to see to that the test is not paid for.

[49er]

using a CPAP can potentially cause harm, you'd at least need a titration to figure out the pressures. How is it that you KNOW you have it?

If the doc will write the script, you could probably safely handle an auto machine without issue.

The sleep labs are important, it's the DME that are more likely to try and scam you

The other option, that I would suggest, is having your doc lie. If the doc is willing to write the script, it's because they feel you need treatment. If they are that sure, checking in an extra box to get your insurance company to pay for it shouldn't be an issue. Have the doc administer another Epworth test and see if you magically score 25+

Hi ironhands,

I don't want to derail your thread but as an FYI, my sleep doctor said that there was no harm using my pap machine even though he questioned whether I had sleep apnea. A whole other post obviously.

Personally, I think if you bought a cpap and went directly to a pressure of 20, that might not be a good thing But I have never seen any studies that have shown careful self titration to be harmful.

49er

[mgaggie]

Personally, I think if you bought a cpap and went directly to a pressure of 20, that might not be a good thing But I have never seen any studies that have shown careful self titration to be harmful.

49er

I have visions of ironhands head exploding if they set the pressure to 20 first off

Makes me wonder about the no studies, as all the patients might of exploded!

[mollete]

I wouldn't automatically think narcolepsy...

With a REM latency of 6 minutes, I would.

You certainly should know. Are there (m)any instances other than with narcolepsy?

sleep onset REM is associated with narcolepsy, major depression, and schizophrenia. A few other psychiatric disorders as well.

And I didn't even move my lips!

A few discussion points:

• Contrary to the thread title, "IMHO" any information is good information. Clues can be hiding anywhere.
• The diagnostic algorithm requires a number of pieces of information, and right now we have snippets.
• Some of that information would include the diagnostic NPSG, a complete sleep history, a sleep log, a bed partner questionnaire and any available lab results.
• Findings on the first salvo of data could/would lead us to limit the number of diagnostic possibilities.
• If the information above were available and accurate, we would also have responses to questions that would have pointed us a little further along the algorithm (for instance, we would have answers to questions that relate to the Tetrad of N. (and if we had a positive query for cataplexy, plenty of people consider that alone to be diagnostic of N.))
• If you were going down the N. path you'd get a HLA-DQB1*0602.
• In answer to your question (bet you thought we'd never get there, did you?), there are plenty of other things that can give you SOREM, and if you wanted to Nwing and say this boy doesn't have N. you'd get filthy rich by taking that bet (general population risk of anybody having N. ~0.05%, chance of seeing a SOREM far more likely that).
• However, that's not what is happening here. Now we have a SOREM in our pocket, the chance of N. has just increased exponentially and you are compelled to go down that road and consider the MSLT.
• If we use the statistics for finding diagnostic N. SOREM on MSLTs (~16% for SOREM on 2 naps) and you took the bet that this isn't N. based on SOREMs alone, you'd still get filthy rich.
• However, if you bet specifically on one of the other causes (and there are a few more than listed above) of this SOREM, you'd lose over the long run.
• I would even spot you the OP's statement about his depression, because "oh wow I'm so depressed" does not automatically start generating SOREMs.
• But while it would have been nice to have an aha moment right about now, a look at the histogram that the OP would later post:
  
  
  
  shows the SOREM(s) to be pretty wimpy, so "IMHO", the first thing I would do is go back and reexamine those epochs more closely to make sure it's unambiguous REM.

[mollete]

However, if you bet specifically on one of the other causes (and there are a few more than listed above) of this SOREM, you'd lose over the long run.

So to win that bet, rather than basing it specifically on a particular cause, you base it on the symptom, take EDS and give the points:

Why Am I SO-REMY?

In summary, then, if one has the information noted above (diagnostic NPSG, a complete sleep history, a sleep log, a bed partner questionnaire, lab results, depression questionnaire de jour, etc.) and can R/O OSA, PLMs, depression, poor/insufficient sleep, drug/alcohol effect, etc.), then SOREMs take on a much greater significance as a marker for N.

TS, never underestimate the value of a good joke as a diagnostic tool.

Although a pit viper springing out of a desk drawer would seem to be equally effective:

[mollete]

Although a pit viper springing out of a desk drawer would seem to be equally effective:

Upon further consideration, it strikes me (the thought, not the pit viper) that "passing out from fear" and "cataplectic event" may not necessarily be the same thing.

[ironhands]

Hi ironhands,

I don't want to derail your thread but as an FYI, my sleep doctor said that there was no harm using my pap machine even though he questioned whether I had sleep apnea. A whole other post obviously.

Personally, I think if you bought a cpap and went directly to a pressure of 20, that might not be a good thing But I have never seen any studies that have shown careful self titration to be harmful.

49er

I'm going by information someone had posted earlier in this, or some other thread, I can't remember the specifics, but I could see it causing some kind of potential dependence. Perhaps weakening the airway passages so that one would be required. No idea. Perhaps people are just trying to err on the side of caution. Have to wonder though, if it won't cause issues if you don't need it; why would it require a prescription?

[ironhands]

[*]But while it would have been nice to have an aha moment right about now, a look at the histogram that the OP would later post:


shows the SOREM(s) to be pretty wimpy, so "IMHO", the first thing I would do is go back and reexamine those epochs more closely to make sure it's unambiguous REM. [/list]

I am the OP

No cataplexy, no bed partner, catathrenia is present, I have SOREMS in the morning when I hit the snooze button for 15 minutes, twice generally.
Depression (possibly atypical) is present, though could be caused by the sleep issues.
sleep attacks at home 2-3 times a week
aural hallucinations (i hear a radio that doesn't exist in the distance) once a week while attempting to sleep
sleep intertia lasting 20 minutes most mornings
woke up this morning to go to the bathroom, lay back down, eyes felt really funny, had to force myself to take deep breaths, felt like I hadn't been breathing. couldn't keep a thought in m head. hypnagogic state?

I'll find out in ...4 hours

thanks for the advice

[mollete]

...no bed partner...

Hey, no problem, solution is simple:

Now This Is Slick!!

[ironhands]

...no bed partner...

Hey, no problem, solution is simple:

Now This Is Slick!!

more of a zappa fan. sleeping alone has done wonders for my mental health and sleep, I much prefer it

[chunkyfrog]

But nothing feels better than a mate who says something so funny, you nearly fall out of bed laughing.