Any thoughts on my being undiagnosed with sleep apnea?

[Berthold]

Here is something unusual for you all. I was diagnosed with OSA in 1996 with a take home sleep test (Vitalog 5000 machine) from a pulmonary doc who had branched out into sleep medicine. I had an AHI of 16, got no REM sleep (and stopped breathing once for 71 seconds!), got an apneator (my brother’s term -- both of my parents have it too), got another take home test 3 months later, AHI down to 1, and I then spent the last 12 years on my Healthdyne Tranquillity Plus.
The DME people here (I live 5 hours from where I got the test) kept maintaining I didn’t need another sleep test and I have a high insurance deductible, so that was kind of that for more testing since the initial diagnosis. I did borrow an APAP machine from them a couple times from them over the past 5 years and got results of median pressure of 12.2 with an AHI of 4.1 and three years later a median pressure of 9.8 and an AHI of 5.9 from those tests. To tell you the truth, I never felt like I slept better after getting the machine or during the following years, and figured it must be the fibromyalgia I came down with in 1989. Earlier this year I got fed up with my sleep quality, and decided to have a regular sleep lab test in a town only an hour away.
To my surprise, during the four hours of sleep I got out of 8 hours in bed (without my machine for the first time in 12 years), the test said I had an AHI of 2.2, and the doc said I don’t have sleep apnea! He said the clincher was my going into REM sleep on my back at the end of the test for 20 minutes and not going into an apnea event. (I would include the report, but can't figure out how to add them here.) Wow. That was 2 months ago and I am still trying to get used to the news. The sleep doc said those old tests aren’t considered valid. I did snore like a demon the night of this last test and woke myself up over and over, having not heard myself snore in 12 years, so I am still using my brand new DeVilbiss machine. I am wondering if there are thoughts any of you have on this test’s results, and also think anyone else who got diagnosed with the old get wired up in the office and go home test may want to consider getting a new test. I have gained weight over these years, so weight loss isn’t the reason for the change. Were those old take home tests that wildly unreliable? Any thoughts?

[rested gal]

I did borrow an APAP machine from them a couple times from them over the past 5 years and got results of median pressure of 12.2 with an AHI of 4.1 and three years later a median pressure of 9.8 and an AHI of 5.9 from those tests.

I did snore like a demon the night of this last test and woke myself up over and over, having not heard myself snore in 12 years

I'd keep using the machine.

[GumbyCT]

Prob most important is what you think Bert?

Does incompetence come to mind?

Do you have any software to check for yourself?

With all those vague, generic, non-descript mentions of where you are and the sleep lab you used how could anyone tell you if they are competent?

[ozij]

To my surprise, during the four hours of sleep I got out of 8 hours in bed ,snip.

That is terrible sleep effeciency.

I did snore like a demon the night of this last test and woke myself up over and over

And terrible sleep.

He said the clincher was my going into REM sleep on my back at the end of the test for 20 minutes and not going into an apnea event

Normal sleep means you go into REM about 90 minutes after you fall asleep. Some people have apneas when their sleep is deeper - stage 3 or 4 and not necessarily in REM.

I know nothing about the older take home tests - however, but a "first night effect" in the lab is certainly a possilbe explanation for those results. I think you're wise not to stop using cpap this point. I hope your new machine is a data tracking machine - I suggest you use it to track you data over time - if you get an AHI of 2 for a week of consecutive nights at a pressure of 4 - and sleep well, you can stop using cpap. One night's PSG may not be enough - and I've read there may by a carry over effect from using cpap that may mask your OSA.

If the machine is not data tracking, I would get one that is - it's cheaper than a repeat PSG. Was the sleep lab an accredited sleep lab?

I have found that if my AHI approache 3 or more I do not feel well - it has to be lower than 3 for me to feel the benefits of therapy.

O.

[track]

Pretty confusing stuff.

As far as the snoring goes...even if I didn' t have sleep apnea I would probably use a machine. It's either that or sleep in another bedroom because my snoring is disruptive to my wife's sleep.

[Julie]

I'd also take a good look at your masks, because the best machine in the world won't compensate for big leaks.

[roster]

I think a few researchers understand now that moderate to heavy snoring will gradually erode IQ and memory as the years go by. If by miracle my apnea were cured but I snored, I would continue to use my cpap.

[Berthold]

Thanks for the thoughts on my question. The doctor and lab are board certified and accredited, so I think that isn't the problem. He pretty much just said that this one night I didn't demonstrate having sleep apnea, and didn't stray much from that. It did seem to me that he dismissed previous evidence for me having it kind of quickly, which is why I asked if others knew anything about those older tests. My night of sleep in the lab this fall was a very atypical night of sleep for me, and in that sense makes the results of that test less valuable. Instead of my usual falling asleep in a few minutes, it took four hours. My fibromyalgia muscle pain was way worse than usual too, which makes my sleep much more restless and dirturbed. So doing more testing with an APAP makes sense to me, and I see that DeVilbiss finally just came out with the means to view data from my machine, so I will pursue that. Thanks for that suggestion Ozij, I appreciate it.

[ozij]

Keep us posted, and let us know how your testing is going, Berthold.
O.

[rested gal]

My night of sleep in the lab this fall was a very atypical night of sleep for me, and in that sense makes the results of that test less valuable. Instead of my usual falling asleep in a few minutes, it took four hours. My fibromyalgia muscle pain was way worse than usual too, which makes my sleep much more restless and dirturbed.

A thought... if pain was causing frequent arousals (even if not to the point of being "awake" long enough to be aware of the brief awakenings) you might not have been settling into sleep long enough at any given time to hit enough muscle relaxation to allow apneas/hypopneas to happen. Somewhat like what happens with UARS (Upper Airway Resistance Syndrome) people whose brains arouse them at the least change in their airway...before the throat can collapse enough to score an apnea or even an hypopnea. People with UARS can have an extremely low AHI but be enduring train-wreck sleep architecture.

Of course, that 20 minutes in REM with no events does give some weight to the doctor's opinion. Wonder if that was a steady 20 minutes, or chopped up fragments of REM with arousals in between.

I'd still use the machine. I agree with Dr. Colin Sullivan when it comes to considering "AHI" :
http://www.pulmonaryreviews.com/sep02/p ... Index.html

[Berthold]

Here is a link to my recent sleep test results,Rested Gal. Let me know if you find anything notable. Thanks for being being willing to help.
http://bertholdolson.winkflash.com/

[rested gal]

Thanks, Berthold, for posting the study pages. I'm not expert, so really don't know what I'm looking at there, but perhaps SAG (StillAnotherGuest) will take a look at it if he sees this topic.

The report mentioned that the meds you had to take at bedtime on the study night were trazodone, (couldn't make out the name of the second one), and Veramyst.

I don't know if (or how) those meds might mess up sleep architecture, but if they do...then between meds and your fibromyalgia pain, I can sure understand why you're not able to get restful sleep.

An arousal index of 18 sounds rather sleep-wrecking to me.

Looks like UARS is one of the things the doctor mentioned in his diagnosis. "CPAP" can be helpful in handling UARS, I believe.

The heavy snoring warrants "cpap" too, imho.

So, yeah, even if you don't qualify for CPAP by "AHI" standards, I think you're smart in sticking with your plan to continue using cpap.

[ozij]

Thanks, Berthold, for posting the study pages. I'm not expert, so really don't know what I'm looking at there, but perhaps SAG (StillAnotherGuest) will take a look at it if he sees this topic.

The report mentioned that the meds you had to take at bedtime on the study night were trazodone, (couldn't make out the name of the second one), and Veramyst.

I don't know if (or how) those meds might mess up sleep architecture, but if they do...then between meds and your fibromyalgia pain, I can sure understand why you're not able to get restful sleep.

An arousal index of 18 sounds rather sleep-wrecking to me.
Looks like UARS is one of the things the doctor mentioned in his diagnosis. "CPAP" can be helpful in handling UARS, I believe.

The heavy snoring warrants "cpap" too, imho.

So, yeah, even if you don't qualify for CPAP by "AHI" standards, I think you're smart in sticking with your plan to continue using cpap.

And, there were 72 arousal related to snoring!!! I too would stick to the cpap.

[StillAnotherGuest]

The report mentioned that the meds you had to take at bedtime on the study night were trazodone, (couldn't make out the name of the second one), and Veramyst.

5-HTP (5-Hydroxytryptophan), AKA the "WD-40" of alternative medicine solutions:

You Name It, 5HTP Cures It

SAG

[StillAnotherGuest]

Hmmm. Guy must've split.

Anyway, I think it would behoove Berthold to take a closer look at combining the 5-HTP with trazodone. As noted by o., the sleep efficiency is abysmal, which is certainly odd if one is taking trazodone. 5-HTP is touted as being able to improve that as well (however, there is no objective scientific basis for that, at least to my knowledge).

But depending on the dosages of these medications, individual response, anything else he is taking, etc. he could have overshot the desired effect and developed or is developing serotonin syndrome, would might explain the inability to take sleep. Another sign would be an increased heart rate. While "Mean EKG During Sleep" was only 62.3, I was struck by this line in the report

...his heart pounding...

so I think that a careful reconsideration of the use of that "Drug Cocktail" would be warranted.

The REM suppression commented in the portable study and seen in the sleep study needs scrutiny, paying particular attention to the dosages and time of adminstration of the medications.

SAG