Any Chiarians having narcolepsy?

[Sug_97]

I have been decompressed and had to vp shunt surgeries... since my last surgery, I feel like I sleep perfectly during the night for the first time in my life. No more insomnia at all.

Had a sleep apnea test though and failed miserably. Turns out, I stop breathing 71.8 times per hour and my oxygen saturation fell to 65% (which doesn't seem that low until you consider that 50% is the saturation level of a recently deceased person). The results really made me pay close attention to my breathing and I realized that I'm having these gasping episodes when I'm awake. Went through several tests, one of which was an MRI and the radiologist kept interrupting the scan saying I was moving because I keep falling asleep. I honestly didn't know I had fallen asleep once, much less the three times he called me on. Which made me start thinking maybe those gasping episodes I'm having when I'm awake aren't really me being awake.

[selmaS]

  Hi Sug....I have not heard ne reports of this, but it could be u r more tired then u think with the sleep apnea and are falling asleep...weird that u do not feel tired tho....hmmm....

I wonder if a C-Pap will help with that...have they suggested one for u with the low oxygen saturation levels?

[Sug_97]

Yeah, I have a cpap that I'm using.

[selmaS]

  How long have u been using it?....could be once ur oxygen levels rise u may no longer have the narcolepsy like issues....

[jiggle93]

Hi Sug, just wondering...did they put you on any meds? My best chiari-girlfriend was dx with this at the beginning of the year. She doesnt have the cpap, but Rx meds, which she has had some problems with. Just curious what the Dr.s suggested?

[Sug_97]

No, just the cpap.

[Sug_97]

My NS believes it's just from the apnea as well. I do use the cpap, but I usually only sleep about 1-2 hours at a time and sometimes forget to put it back on. He believes that once I get more sleep, I will be less tired during the day. Not really sure though, as I still sleep 6-8 hours a day, I just do it in spurts.

Anyway, he doesn't want to diagnose me with narcolepsy because it can have a lot of repercussions that are hard to reverse. I can respect that.

[selmaS]

  Thanks for this update as well.....very interesting with ur Drs hesitance to DX u.....all good to know for others in this situation.

[AKC_75]

Just because you are sleeping 6-8 hrs...it is not a RESTFUL SLEEP!! You probably need a sleep aid of some kind. Ask you Dr. If he will not give you one then you can try ZzzQuil. It is non-habit forming and works great. And make sure you keep that mask on, it's important. Sleep apnea is not something to gamble with. On my machine there is an option that makes it beep after a couple of mins if it is still running when you are not wearing it...that helps me a lot.

[Sug_97]

I was actually told NOT to use sleep aids or drink at night as it can cause additional risks with the apnea.