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Overwhelmed newbie with mixed apnea and apathetic
#1
Overwhelmed newbie with mixed apnea and apathetic
I'm very glad to have found these forums and consequently the SleepyHead software. This looks like a great community and I'm learning a lot.

After seven years of being treated for various mood disorders, I was diagnosed with mixed apnea, idiopathic hypersomnia*, and REM behavior disorder (RBD) last year. With seven months of APAP therapy (73% compliance rate), my AHI hovers at 2.5-4.0 (down from 20.0 at my diagnosis). During the diagnostic studies, I exhibited no stage 3 sleep. 

However, I'm still exhausted and my doctor's apathy is demoralizing. Since my numbers look reasonably good (I don't think I qualify for ASV), she shrugs her shoulders. In her defense, I'm not a "typical" sleep disorder candidate, since I'm in my 20s and have a BMI of 21. I eat healthily, run thrice a week, walk and hike often, and sleep 7-9 hours a night. She says there's nothing else we can do about the hypersomnia* and RBD. I'm not responding to melatonin and discontinued Adderall after unpleasant side effects. I'm on no other medication, although I take 2000mg fish oil and Vitamin D supplement.

I've attached the SleepyHead output for last night if that's of any help -- I'm still figuring out the software so sorry if it's not in the best format. It looks like a pretty good night's sleep (9 hrs and AHI < 2) but I woke up exhausted and have been dead tired since. Scanning the past few weeks' reports, I've noticed that my mask leaks during the last third of the night. However, there are almost never any large leaks. I've tried sleeping on a flat pillow and also on a wedge pillow. No difference.

I feel like I've hit a dead-end and don't know what to do next. Maybe the problem is less the apnea and more the RBD and hypersomnia, which I have no way of monitoring or addressing. Any advice or suggestions would be helpful. Thank you for reading my rant. Smile

* All signs point to narcolepsy according to my doctor. However, we didn't proceed with confirmatory tests because she says the treatment wouldn't differ.
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#2
RE: Overwhelmed newbie with mixed apnea and apathetic
Welcome to Apnea Board. Well your leaks aren't that bad and your numbers are pretty good. I think I'd be in the market for a new Doctor who wants to get to the bottom of this problem.
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#3
RE: Overwhelmed newbie with mixed apnea and apathetic
A CPAP uses pressure to prevent the airway from closing and causing an obstructive apnea of flow limitation. It really can't do much more than that. With respect to central apnea it is not going to help reduce it, and in some circumstances it may even make it worse. That said that chart from last night was pretty good for someone that has a mix of central and obstructive apnea. I always look at the obstructive apnea events first to see if there is room for improvement, and only saw 3 OA events. That is pretty good. I have a similar mix of OA and CA events and got an AHI last night under 2.0 for the first time ever, so I was ecstatic! My wife got a 0.3 AHI but has no central apnea at all usually. Those of us with CA event issues have to set a different expectation. 

If you want to attempt a small improvement in OA events there are two ways to go. One would be to increase your minimum pressure from 9 to say 10 to see what it does. I observed that all three obstructive events were when pressure was at the minimum of 9 cm. So increasing to 10 might prevent one or two of them. The other option is to turn the FLEX setting down or off. It is normally the EPAP pressure or green trace in SleepyHead that determines whether or not you have an obstructive apnea. If you turn FLEX off, it will increase EPAP without increasing IPAP (red trace). I would not do both at the same time. Try an increased minimum for a few days. Then put the minimum back to 9 cm and try no FLEX for a few days. Then you can compare the results. I try to minimize OA events and just observe the rest of the numbers. 

You could improve your SleepyHead layout with two changes. First, beside the date there is a little triangle. Click on that and the monthly calendar will go away allowing more important stuff to show in the detail column. Second, go to File. Preferences, Appearance, and uncheck the box that says something like "Show event pie chart". You don't need that pie chart and again if you get rid of it, then more important stuff will be displayed.

Hope that helps some, welcome to the forum...
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#4
RE: Overwhelmed newbie with mixed apnea and apathetic
Have you been tested for hypothyroidism? and not just TSH, you should have FreeT3, FreeT4, anti-TPO and anti-thyroglobulin done. You might also consider getting a full iron panel.
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#5
RE: Overwhelmed newbie with mixed apnea and apathetic
Thank you all for the comments and support. I appreciate the feedback and it's nice to be among people who understand what it's like to live with a sleep disorder. Smile I have been tested for TSH but perhaps other tests are a good idea. I will look into increasing the minimum pressure on my machine also -- I'm not sure if I have the ability to. Might have to ask my doctor.
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#6
RE: Overwhelmed newbie with mixed apnea and apathetic
(04-25-2018, 10:53 PM)jennykat Wrote:  I will look into increasing the minimum pressure on my machine also -- I'm not sure if I have the ability to. Might have to ask my doctor.

It is quite easy to change the minimum pressure, and other options if you wish. You just need to get into the Clinical Menu. Here is a link that shows you how to get into the menu. After you make the change, exit to the normal menu.

Dreamstation ClinicMenual 
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#7
RE: Overwhelmed newbie with mixed apnea and apathetic
Wow - I didn't realize I could get into provider mode. I thought my machine was locked. I will have to try this tonight.

Last night was not too great (screenshot attached). After I woke up around 5am, I used some Flonase and my chart for the next two hours looks cleaner. Not sure why or if it helped with the central apnea and periodic breathing. I have no idea why last night was worse, since I experienced no abnormal allergies or stuffiness during the day (I have some allergy issues every now and then), my apartment is clean, and I didn't eat anything that I'm sensitive to.
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