Narcolepsy is an Autoimmune Disorder

[soycoffee]

Yesterday I was checking the American Autoimmune Related Diseases Association (AARDA) and reading the list of Autoimmune diseases from the bottom up, when I came upon Narcolepsy. I had thought of Narcolepsy purely as a sleep disorder, but it has now been shown to be autoimmune -- well, three years ago.

http://www.eurekalert.org/pub_releases/2009-05/sumc-nia042809.php

In a brief summary:
The brain is supposed to put out a chemical, hypocretin, that promotes ordinary wakefulness. In Narcolepsy, the brain cells that are supposed to secrete hypocretin have been killed off. HLAs -- antigens -- are suspected to be the agents involved in killing off the hypocretin-secreting brain cells. HLAs are major players in autoimmunity. Ergo, Narcolepsy is an autoimmune disease.

Does that mean that rheumatologists know anything about narcolepsy? Probably not. Probably *some* neurologists, and most/all sleep doctors.

How does it affect me, and why did I research this? My sleep doctor upped my prescription of Provigil in January, to 200 mg/day, because I was still falling asleep during the evening news. When I do it, I don't just nod and doze and then sleep. One minute I'm awake, the next minute I'm asleep. The high dose of Provigil** keeps me from falling asleep, anymore, when I'm talking to people. I don't drive. I also have sleep apnea, and use a CPAP machine every night. I haven't been diagnosed with narcolepsy, but someone I know did have it, and would fall asleep in the middle of a conversation -- very unsettling. Now that I know about the autoimmune connection, I'm going to go back to my sleep doc to discuss a narcolepsy diagnosis. True, it won't change much, but I'll know.

Yes, I know about Nuvigil, but have no insurance coverage for it.

I hope for most of us it's just a curiosity.
Best,
Soycoffee

PS Restless Legs Syndrome (RLS) is also an Autoimmune disorder, according to AARDA -- and that's the family connection for me. My father had RLS.

[Joe S.]

Soy, I had a good friend that died from Narcolepsy a little over a year ago. Brain fog had gotten so bad that he forgot to take his medication. I was feeling very tough the year before and we were betting who would die first. He was unable to use a CPAP and would find it thrown across the room in the morning. It is interesting that you bring this up now. This is just a few short days from the one year anniversary of his wake.

[Shade]

I just read this morning about RLS being an autoimmune disorder.  Never would have thought it.

[Autoimmunity]

I have been diagnosed with narcolepsy (no sleep study - symptoms + positive genetic tests).  I take nuvigil and on bad days (weeks) I still cannot stay awake at work and it SUCKS!!  People just do not understand (although I've only told 2 coworkers.  I still have a tough time believing that I actually have it.   

[mshistory]

How interesting... I had a doctor once suspect I had RLS too because of my fatigue and the fact that I never feel rested in the mornings. It's only gotten worse over the years 

[Iris]

I didn't know that.. I was diagnosed with it in 2005 but my pcp never said anything about it being an autoimmune disorder..

I just read this morning about RLS being an autoimmune disorder.  Never would have thought it.

[gold55]

did not know about narcolepsy and RLS....very very interesting!

[irish]

In order to be accurately diagnosed with narcolepsy one really needs to see a neurologist and have a sleep study. This is a serious disease that needs proper treatment. It has caused many injuries due to falling asleep at the wheel of the car and drop attacks can cause some bad injuries.

I have one DIL with narcolepsy. She is doing better now that she has finished college and recovered a more normal sleep pattern and proper medications.IRish

[susanep]

This is all very interesting. I need another sleep study. Have to wait until I get some insurance again. There are just so many autoimmune disorders.

susanep

[Madison Granny]

My 33 year old nephew has narcolepsy.  He has had it since he was in his early 20s.  They must have found the right medicine for him since he is doing really well and doesn't fall asleep when he shouldn't anymore.  I had read that it was an autoimmune disorder but hadn't heard about RLS being autoimmune.  I'm wondering how much can be traced back to autoimmunity?

[eye2dry]

hello all

interesting addition to the AI catagories...RLS and narcolepsy.

my son in laws mother has RLS. she was in a car accident 20  years ago and shortly thereafter developed it. she is on disability now...use to be a pharmacist.

I traveled with a Home Health nurse for part of my clinicals and we stopped in on an elderly woman who lived alone. We took vitals..made the usual pt. assessments..checked her medications..etc..we were sitting at her kitchen table and she just fell right asleep on us.

The worrisome thing was...she was canning green beans with a pressure cooker on the stove when we arrived....so very dangerous with her condition.
That was my first introduction with narcolepsy.

eye2dry

[A66eyroad]

Interesting article I just read about narcolepsy:  http://well.blogs.nytimes.com/2012/03/05/too-often-doctors-overlook-narcolepsy/#more-72711