Aa
Aa
A
A
A
Close
3184083 tn?1347402143

Any Chiarians having narcolepsy?

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.

9 Responses
Sort by: Helpful Oldest Newest
620923 tn?1452915648
COMMUNITY LEADER

  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?
Helpful - 0
3184083 tn?1347402143
Yeah, I have a cpap that I'm using.
Helpful - 0
620923 tn?1452915648
COMMUNITY LEADER

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

Helpful - 0
1827123 tn?1383865276
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?
Helpful - 0
3184083 tn?1347402143
No, just the cpap.
Helpful - 0
3184083 tn?1347402143
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.
Helpful - 0
620923 tn?1452915648
COMMUNITY LEADER

  Thanks for this update as well.....very interesting with ur Drs hesitance to DX u.....all good to know for others in this situation.
Helpful - 0
Avatar universal
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.
Helpful - 0
3184083 tn?1347402143
I was actually told NOT to use sleep aids or drink at night as it can cause additional risks with the apnea.
Helpful - 0
Have an Answer?

You are reading content posted in the Chiari Malformation Community

Top Neurology Answerers
620923 tn?1452915648
Allentown, PA
987762 tn?1331027953
Australia
1756321 tn?1547095325
Queensland, Australia
Learn About Top Answerers
Didn't find the answer you were looking for?
Ask a question
Popular Resources
Find out how beta-blocker eye drops show promising results for acute migraine relief.
In this special Missouri Medicine report, doctors examine advances in diagnosis and treatment of this devastating and costly neurodegenerative disease.
Here are 12 simple – and fun! – ways to boost your brainpower.
Discover some of the causes of dizziness and how to treat it.
Discover the common causes of headaches and how to treat headache pain.
Two of the largest studies on Alzheimer’s have yielded new clues about the disease