Expertise/Resources for narcolepsy w/ apnea

[McMartin]

I have combo apnea and my doc tells me it is well-controlled by my ASV, according to the sleep reports.  Yet I am still suffering from some strange sleep phenomena and daytime sleepiness.  The daytime sleepiness can be extreme and includes most certainly some flavor of narcolepsy/hypersomnia.

When I have apnea events, especially if I nap with without the ASV, they are extremely unpleasant, they are accompanied by what seem to me neurological "misfires" and "lightning" (my words) that lead to lightning shooting from my head to toes, nerve pain in my foot/toes, foot and leg cramps, jaw clench, and even my cheeks itching.  Doc thinks there's some neurological something going on, maybe interfering with the REM.  This nerve stuff accompanies the apnea events, but he says it doesn't sound like apnea.

What I do know is as I am about to drift off to sleep, and then I stop breathing, and then some neurological thing happens, and then I wake up and feel very anxious, heart pounding, tight chest, sense of unease etc.  It all happens nearly instantaneously I assume.  The sense of anxiety and physical manifestations can last a long time afterward, sometimes for hours perhaps, BP is elevated too.

I can't get scheduled for the neurologist or MSLT sleep study for a while, but do have them booked. I am trying to use the ASV during the day naps but it’s not always possible.


Anyway, has anyone heard of this sort of narcolepsy/hypersomnia behavior, or some other neurological connection with the apnea?

My other thought is PTSD.  After years of untreated apnea, the occasional apnea events I have might be triggering a strong anxiety response?

Sidebar: as I understand it, my ASV only registers an apnea event if I stop breathing for ten seconds?  Is that correct?  I'm certain my events are far quicker than that. However it is true that when I have my ASV in use, I almost never wake up again with a problem during the night.

Thanks

[Jay51]

The ASV should stop all CA's.  Also, if your epap is high enough, it should stop OA's as well (assuming you don't have positional apnea).  Through experimentation, I found that I could still get some H's if my epap was not high enough.  Possibly CA's as well if your PS is not high enough to force a breath. 

I kind of had similar things happen with me before I got into treatment for sleep apnea - a kind of "vibrating" sensation at times at different parts of my body.  

Possibly getting more neurological testing might help.  Possibly.  Or even treatment for the anxiety you write about. 

Other members may have more experience with similar symptoms that you posted, and may want to post as well.

[SarcasticDave94]

You'd be helped much better if you'd download OSCAR, the free report tool. The ResMed ASV is pretty easy to adjust, if we see the sleep data.

"I stop breathing, and then some neurological thing happens, and then I wake up and feel very anxious, heart pounding, tight chest, sense of unease etc...", sounds like an Apnea event. You say you don't always sleep with the ASV on, so it's possible. You need to get to where you don't sleep without the machine.

Get OSCAR, use an SD card in the left side of the ASV to capture detailed data, then load that data into OSCAR, creating chart screenshot for attaching to a post. We'll help with the setup.

PS tell us your current settings

[McMartin]

You say you don't always sleep with the ASV on, so it's possible. You need to get to where you don't sleep without the machine.

Get OSCAR, use an SD card in the left side of the ASV to capture detailed data, then load that data into OSCAR, creating chart screenshot for attaching to a post. We'll help with the setup.

PS tell us your current settings

It's difficult sometimes for me to use the ASV.  I do not always nap at home for example.

I have used OSCAR.  What report and time period should I do?

FWIW I have looked at reports before when I have had a bad night, despite being on the device, and the reports show a perfectly fine sleep.

Settings 

• Mode: Auto ASV
  
• Min Epap: 4.0
  
• Max Epap: 8.0
  
• Min PS: 3.0
  
• Max PS: 8.0
  
• Ramp: Off
  

Thanks

[SarcasticDave94]

It could be your EPAP is low both Min and Max settings, and PS Max can be tried at 15.

Since what we're getting from you is the ASV isn't doing well enough as is, maybe a start over is necessary.

Leave Ramp off.

Including the ResMed ASV Titration guide. Follow it and see what you get.

On OSCAR show us the most recent chart or two. There can be something there that helps guide the setup to be better.

   

[ejbpesca]

I was diagnosed with narcolepsy by a Nap Study performed after my Sleep Study.

Without my CPAP therapy, I too will dose off, stop breathing, and jerk awake due to not breathing.  With therapy, I continue to have CAs, high Flow Limitations, and problems with aerophagia.

I will be asking for an ASV machine soon.

 The test showed that each time I lay down and lights were out I went immediately into REM sleep.  This continued for three consecutive naps with 30 minute breaks in between.

I have yet to see discussions of nap studies.  They are available here without an overnight sleep study.

A stimulant medication is what was prescribed for my narcolepsy.