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OSA/Narcolepsy/Dysautonomia

Hello,
I am writing for my son who is 23, 170 lbs and was diagnosed with moderate sleep apnea about 4 years ago. He went off to college and had to come home after 3 years. Now, we are trying to get this resolved so he can go back and finish. Struggling and could really use some expertise.

His first sleep study showed significant degree of obstructive respirations using PES tube (naso-esophageal pressure transducer). He pulled -27 cm H20 with RDI of 13 episodes per hour during NREM and 25 during REM sleep. Oxygen Sat dropped to 88%. The MSLT was abnormal showing hypersomnolence but no REM sleep so no narcolepsy diagnosis. Setting ranged from 9 to 11 cm H20 on his CPAP - a ResMed EPR Elite II.

3 years of trying every mask and chin strap and with another PES sleep study to verify pressure, we finally gave up on CPAP and he moved to a TAP appliance. My son has very sensitive skin and tried his best to adjust. The TAP appliance has been a better fit for him.

Most recent sleep study with the TAP appliance IN showed obstructive respirations and possibly needing some treatment by adding CPAP (using TAP PAP contraption). His RDI dropped to 11 episodes per hour with -3 to -6 cm H20 and sometimes up to -20cm H20. Lowest Oxygen Sat dropped to 93% with 6 episodes through the night. Apnea Index 0.3 Central Apnea Index 0, Hypopnea Index 3.9 (making AHI 4.3).

So, the impression was that the TAP appliance reduced the number of obstructive events but that he still had too many effort based arousals (217 arousals in 7 hr night (Index of 33). Arousals mostly in spontaneous category then snoring then hypopnea) and that while he was getting good oxygen, the arousals are lifting him out of REM or deep sleep and causing sleep fragmentation.

Then an EKG finding showed a possible arrhythmia. Taking him to a cardiologist who felt that his HR variation were excessive and possibly CAUSING the arousals that were not associated with obstructive events (where the HR rises as a response to no air). His range was 30bpm to 196 bpm throughout the night. The cardiologist felt his HR should be more stable through the night. We will be trying a Holter monitor to see if that shows anything. Also, considering purchasing a pulse oximeter to help find a pattern.

His MSLT showed REM sleep during naps so now he was diagnosed with narcoplepsy without cataplexy. He has no other narcoleptic symptoms.

He is on Nuvigial 150mg in mornings and guanfacine 1mg at night. Previously, he tried Inderal 30mg at night to settle the HR down but that had no effect.

He tested positive for daytime HR variation (dyautonomia - specifically Postural Orthostatic Tachycardia Syndrome) but otherwise, he is healthy. He feels like dirt in the mornings and has bone-crushing fatigue even with TAP (which he has had since August 2012 and uses religously). He feels better with the TAP than without but that's not saying much. He feels 2% better but essentially the same as before the CPAP 4 years ago.

Questions:
1. Is HR variation of 30 to 196 bpm normal during sleep?
2. Is 217 arousals normal? or near normal?
3. What could be the reasons for his autonomic dysfunction at night - are the arousals due to erratic HR or due to a slight, unmeasured obstructive event?
4. Which pulse oximeter would be best? Should we buy a Zeo or other device (I would like to track HR, Oxy Sat and which phase of sleep he is in but I haven't found a device that does all 3. It would be nice to have a device that would catch arrhythmia just in case that's an issue).

I don't know what other questions to ask. Help!

Thank you in advance to anyone offering advice,
Marti
2 Responses
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Avatar universal
MEDICAL PROFESSIONAL
Hello and hope you are doing well.

From your history it appears he has narcolepsy and is on therapy. He also has obstructive sleep apnea, for which he is not using the CPAP. Sleep apnea can cause variations in heart rate. And he should try to start using the pressure ventilation. The heart rate and the arousals you mentioned are not in the normal range. Masks can give a claustrophobic feeling to certain individuals. He could start by trying them for very short periods and then increase the timing as he gets more comfortable. Alternatively, you could try BiPAP, which is a bi level pressure device, which regulates according to inspiration and expiration, and hence is more comfortable.

Hope this helped and do keep us posted.
Helpful - 0
Avatar universal
is there a way to recover my energy and memory and thinking?  I am on an asv resmed and oxygen but it doesn't cure me and I'm worried I won't be able to work and study and I am already having terrible problems...

I started klonopin which seems to help central apnea a lot- also ambien seems to help.  I don't know why I have centrals (according to the sleep lab 73% O2 desats and osa/csa)?  I'm really worried I've lost my memory and focus

I would stop nuvigil if possible- what does it do by the way?

Helpful - 0
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