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[Diagnosis] Is this really apnea?
#1
I am relatively new to the world of CPAP and apnea and looking for some help. I'm 36, 5'8" and 160. Neck size is 15 1/2. Non-smoker, exercise regularly.

After months of extreme daytime sleepiness, I went to a sleep doc who ordered an oximetry, overnight home test, a sleep study, and an MLST (daytime nap test). The oximetry and at-home were fine. The sleep study showed an AHI of 5.2 (all hypopneas) and I slept for all 4 naps in the MLST in under 7 minutes (avg.), but no REM. I fell asleep in 3.7 minutes on one of them! After reviewing the results, my doctor prescribed a CPAP based on the AHI score and I've been using it for 2 months.

I am wondering if this is the right therapy for my problem. When I say I have excessive daytime sleepiness, I mean that I fall asleep at my desk everyday. I fall asleep talking to people. I fall asleep in class (I'm the professor). An AHI of 5.2 seems awfully low for my symptoms, I think. That's where I need some help. That low score combined with the failed MLST makes em think CPAP won't work. So far, no improvement, but my doc says it might take 12-18 months to be effective with an AHI as low as mine. I don't think I can wait that long to just find out if it will work or not. He also doesn't have any other solutions since I don't appear to have narcolepsy and he doesn't like "idiopathic" as a diagnosis. I don't either. Any thoughts out there? I have the full sleep study results if that helps, let me know.
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#2
Keeping in mind that no one is an expert here. 5.2 AHI consisting of hypos is really skirting the borderline. The variability is testing might lead to say 4.8 on another nights study. Your BMI is 24.4 which is just inside the upper bound of normal.

So, why are you falling asleep when talking to people and in class?
I think we'd all agree that's not normal.
So, he ruled out narcolepsy because of no REM in the naps?

How about a neurological workup?

We are all pro CPAP here; but this may just be a case where it will not be of benefit.
Idiopathic is medi-speak for: I dunno.
INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
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#3
Thanks for your thoughts. I don't want to give up CPAP if it can help, which is why I'm here.

Yes, he ruled out narcolepsy. My understanding is that you need to go into REM when falling asleep for that diagnosis. I don't have parasomnias or cataplexy. My MLST of 6.6 minutes is just above the defined value of under 6 (I think) for narcolepsy. Go figure.

Funny you mention a neuro workup - I have an evaluation next week. That was ordered by my PCP when I reported the results of my sleep study and prescription for CPAP. Hie was a little dubious and it started giving me second thoughts. I don't know what they would be looking for neurologically, so I need to do some research to ask the right questions.
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#4
Hi Tetramer,
WELCOME! to the forum.!
Good luck to you at your next workup, much success to you with finding out what is going on with your sleep problems.
Hang in there for more suggestions.
trish6hundred
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#5
G'day Tetramer, welcome to Apnea Board.

As Mongo said, your AHI of 5.2 is borderline, and it does seem unlikely to my non-medical mind that such a low apnea count could cause the degree of sleepiness you describe. I assume you've had your blood tested for haemoglobin, thyroid, vitamin D etc etc?
DeepBreathing
Apnea Board Moderator
www.ApneaBoard.com


Bed

INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
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#6
Welcome to the forum Tetramer! Hope you find your diagnosis and are able to begin getting better soon!
APNEABOARD - A great place to be if you're a hosehead!! Rolleyes

-------------------------------------------------------------------------------------------------
EVERY ACCOMPLISHMENT BEGINS WITH THE DECISION TO TRY!
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#7
(01-16-2016, 09:40 PM)Tetramer Wrote: I am relatively new to the world of CPAP and apnea and looking for some help. I'm 36, 5'8" and 160. Neck size is 15 1/2. Non-smoker, exercise regularly.

After months of extreme daytime sleepiness, I went to a sleep doc who ordered an oximetry, overnight home test, a sleep study, and an MLST (daytime nap test). The oximetry and at-home were fine. The sleep study showed an AHI of 5.2 (all hypopneas) and I slept for all 4 naps in the MLST in under 7 minutes (avg.), but no REM. I fell asleep in 3.7 minutes on one of them! After reviewing the results, my doctor prescribed a CPAP based on the AHI score and I've been using it for 2 months.

I am wondering if this is the right therapy for my problem. When I say I have excessive daytime sleepiness, I mean that I fall asleep at my desk everyday. I fall asleep talking to people. I fall asleep in class (I'm the professor). An AHI of 5.2 seems awfully low for my symptoms, I think. That's where I need some help. That low score combined with the failed MLST makes em think CPAP won't work. So far, no improvement, but my doc says it might take 12-18 months to be effective with an AHI as low as mine. I don't think I can wait that long to just find out if it will work or not. He also doesn't have any other solutions since I don't appear to have narcolepsy and he doesn't like "idiopathic" as a diagnosis. I don't either. Any thoughts out there? I have the full sleep study results if that helps, let me know.

Hi Tetramer,

Welcome to the board.

Where you tested for RERAS?

https://en.wikipedia.org/wiki/Respirator...ance_index

Many times (not always), people who have low AHIs like you do, end up having alot of RERAS which points to UARS. Your current pressure might not be adequate to address these issues and could be a possible reason for your fatigue. But if your sleep study did test for them and you ended up not having any, then you might want to get tested for the various issues that Deep Breathing mentioned if you haven't done so already.

49er
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#8
(01-17-2016, 07:22 AM)49er Wrote: Where you tested for RERAS?

https://en.wikipedia.org/wiki/Respirator...ance_index

Many times (not always), people who have low AHIs like you do, end up having alot of RERAS which points to UARS. Your current pressure might not be adequate to address these issues and could be a possible reason for your fatigue. But if your sleep study did test for them and you ended up not having any, then you might want to get tested for the various issues that Deep Breathing mentioned if you haven't done so already.

Right. It is best to use the Respiratory Disturbance Index (RDI is the AHI plus the average number of Respiratory Effort Related Arousals per hour) to evaluate the degree of obstructive sleep apnea. An RDI above 5.0 should be treated.

Your machine is not a bilevel machine, which would have been a better machine for eliminating RERAs, but if RERAs are a problem, then it would be likely to help reduce RERAs if you were to increase the Min Pressure as much as is comfortable, and increase the EPR setting to 3 (increasing by 1 each night and then staying at 3), and very gradually increase the Max Pressure (increasing by 1 each week or two and watching the data and how you feel, to see if higher pressure is helping).

Does your machine report RERA events?

Take care,
--- Vaughn

Membership in the Advisory Member group should not be understood as in any way implying medical expertise or qualification for advising Sleep Apnea patients concerning their treatment. The Advisory Member group provides advice and suggestions to Apnea Board administrators and staff on matters concerning Apnea Board operation and administrative policies - not on matters concerning treatment for Sleep Apnea. I think it is now too late to change the name of the group but I think Voting Member group would perhaps have been a more descriptive name for the group.
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#9
DeepBreathing - All those labs were done and then some. Everything is normal, absolutely boring.

To Vaughn and 49er, I looked at the results of my sleep test and my RERA was 0, so my RDI was also 5.2 since there were no RERA events. Correct, my machine won't measure this, I won't have it from the sleep study.

Thanks again for comments, questions and suggestions.
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#10
(01-17-2016, 09:20 PM)Tetramer Wrote: I looked at the results of my sleep test and my RERA was 0, so my RDI was also 5.2 since there were no RERA events. Correct, my machine won't measure this, I won't have it from the sleep study.

I think "Zero" may mean they looked for RERAs and found none, or may mean they didn't look.

Maybe best to call them to ask whether RERAs were looked for.

Membership in the Advisory Member group should not be understood as in any way implying medical expertise or qualification for advising Sleep Apnea patients concerning their treatment. The Advisory Member group provides advice and suggestions to Apnea Board administrators and staff on matters concerning Apnea Board operation and administrative policies - not on matters concerning treatment for Sleep Apnea. I think it is now too late to change the name of the group but I think Voting Member group would perhaps have been a more descriptive name for the group.
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