Welcome

Welcome! You are not alone.

If your family has been affected by Narcolepsy, consider Living With Narcolepsy your second home.

NOW....GET STARTED:

1. Become a Member 
2. Make Friends
3. Post to a Forum
4. Read or write a Blog
5. Join or Create a Group
6. Follow us on Twitter
7. Become a fan to our Facebook

Got some QUESTIONS? 
Check our FAQ PAGE.

Read More from our  First-Time-User Guide.

Concerned About Privacy

Since content and usernames are searchable on this site, you may protect your anonymity by creating a unique username.

To change username, click here. 

Birthdays

Birthdays Tomorrow

Need a Doctor or Specialist?

Disclaimer

All of the material provided on this site, such as text, treatments, dosages, outcomes, charts, patient profiles, graphics, photographs, images, advice, messages, forum postings and any other material submitted on this site are for informational purposes only and are not a substitute for professional medical advice or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding your health never disregard professional medical advice or delay in seeking it because of something you have read on this site.

Please Be Kind & Use Appropriate Language

Let's Keep it Nice & Clean
  1. Describe (share experiences), not Prescribe (suggest treatment for others).
  2. No spam.
  3. No personal attacks or defamatory posts.
  4. No offensive content (profanity, sexual references, illegal activity subject matter, pornographic material or photos).
  5. No specific doctor or hospital name mentioned in a negative context, for legal reasons. Specific doctor or hospital names in a positive context are welcome.
  6. No sharing of members' posts to other sites without their express permission.
  7. No solicitations or promotions of goods or services. No fundraising without the permission of the moderators.
  8. No email addresses or phone numbers on the forum, please.
  9. We welcome people of any faith and no faith, but we ask that you not evangelize or attempt to impose your belief system on other members.
  10. Check your politics at the door, please.

Thanks for your cooperation.

Community Moderators

Have a question, concern, or suggestion? Or would you like to volunteer?

Please send a private message to a moderator.

Nel
Dancermom
KristinTMAAF

LivingWithNarcolepsy is a peer-to-peer network

To get support, give support.

Gift Store

ClinicalTrials.gov Studies

Loading… Loading feed

PARTNERS

BensFriends.org is proud to partner with a number of organizations to help our members in various areas, including legal, financial, research and medical. 

Know more about our PARTNERSvisit this link.

About

 

What is Narcolepsy?

Narcolepsy is a chronic sleep disorder, or dyssomnia, characterized by excessive sleepiness and sleep attacks at inappropriate times, such as while at work. People with narcolepsy often experience disturbed nocturnal sleep and an abnormal daytime sleep pattern, which often is confused with insomnia. Narcoleptics, when falling asleep, generally experience the REM stage of sleep within 5 minutes; whereas most people do not experience REM sleep until an hour or so later.

Narcolepsy is a neurological sleep disorder. It is not caused by mental illness or psychological problems. It is most likely affected by a number of genetic mutations and abnormalities that affect specific biologic factors in the brain, combined with an environmental trigger during the brain's development, such as a virus.

Forum

problems with memory and focus

Started by TiredinGA in General. Last reply by TiredinGA 12 hours ago. 3 Replies

I have narcolepsy and sleep apnea requiring cpap at night. I currently take Provigil 200mg twice a day.Recently I have started having problems focusing and retaining information. I've been on same job for 15 years and done ok but now learn something…Continue

Narcolepsy Alert Dogs. Rare a few years ago but quite often reported now. Could such a dog help you?

Started by Nel in General. Last reply by Nel 16 hours ago. 2 Replies

Dogs with Odd JobsService Dogs and Teams Going Beyond Traditional Roles…Continue

Many Forms of Work

Started by Carol in General. Last reply by Nel 19 hours ago. 2 Replies

I worked part time for many years and now I can't. My brain is in the habit of not identifying the things I can do (some exercise, laundry, some working around the house) as work, even if I volunteer. It's a very rigid mindset and a hard habit to…Continue

So many questions...so many dead ends

Started by DarkFaerie in General. Last reply by Carol on Friday. 5 Replies

I have been dealing with what I always thought was insomnia since 1997. After numerous dead ends to my sleepless nights, and constant tiredness my doctors decided I needed to have an MSLT done. I had it done on March 2 of this year and my results…Continue

Mobile App and E-Book Available!

Keep in touch with friends. Get support and information while on the go. DOWNLOAD the Ben's Friends iPhone App now!

Be inspired by the helpful tips and amazing stories of patients with rare diseases. Get the e-book "We're in This Together: Stories & Tips from Patients with Rare Diseases" HERE.

Latest Activity

Ranger posted a blog post

A way to start to explain Narcolepsy to people...

Dear All,  Recently was thinking of an easy simple way for people to understand Narcolepsy.  This…See More
12 hours ago
TiredinGA replied to TiredinGA's discussion problems with memory and focus
"I've been on Provigil for  8 years. started off with 200mg once a day now 400mg twice a…"
12 hours ago
Tacp Girlfriend commented on SleepyGrunt's photo
Thumbnail

20131218_155552

"Gorgeous Puppies."
15 hours ago
Tacp Girlfriend liked SleepyGrunt's photo
15 hours ago
Tacp Girlfriend liked Narcobern's photo
15 hours ago

Moderator
Nel replied to Nel's discussion Narcolepsy Alert Dogs. Rare a few years ago but quite often reported now. Could such a dog help you?
"Please do Tacp Girlfriend. Lovely to hear from you too. Good luck with the research and take care…"
16 hours ago
Tacp Girlfriend liked sarahquinn2275's discussion Shedding Some Light on the Invisible Disease... mega rant.
16 hours ago
Tacp Girlfriend replied to Nel's discussion Narcolepsy Alert Dogs. Rare a few years ago but quite often reported now. Could such a dog help you?
"Hello Nl! Always happy to hear from you. YAY! I have seriously been considering this option. A…"
16 hours ago

Top Content 

1 Does anyone else have recurrent hypersomnia - sleeping 18-20 hours a day?

Does anyone else have recurrent hypersomnia - sleeping 18-20 hours a day?

Posted by Virginia on March 25, 2015

2 A Real Eye-opener:  Narcolepsy bears classic autoimmune hallmarks

A Real Eye-opener: Narcolepsy bears classic autoimmune hallmarks

Posted by Nel on March 10, 2015

3 So many questions...so many dead ends

So many questions...so many dead ends

Posted by DarkFaerie on March 24, 2015

4 Many Forms of Work

Many Forms of Work

Posted by Carol on March 26, 2015

5 Happy Valentines Day!

Happy Valentines Day!

Posted by Nel on February 14, 2015

Photos

Loading…
 
 
 

Help Us Help Others

Are You in Crisis?

First take a deep breath, then call the National Suicide Prevention Hotline immediately.  1-800-273-TALK for members in the United States.

For international members, please visit http://www.suicide.org/international-suicide-hotlines.html for information on where to call.

Bens Friends

Help Ben's Friends

Like & Follow Us!

Follow Me on Pinterest

Give Us A Review

Join Ben's Friends

To Support LivingWithNarcolepsy.org, Click an Ad. Or Two.

Blog Posts

A way to start to explain Narcolepsy to people...

Posted by Ranger on March 31, 2015 at 8:44pm 0 Comments

Dear All,

  Recently was thinking of an easy simple way for people to understand Narcolepsy.

  This is what I came up with:

  Narcolepsy "is like when a person with type 1 Diabetes needs insulin".  When we need to sleep it's…

Continue

WANTED: Career in testing lazy-boy lounge and mattresses

Posted by sleepynearseattle on March 31, 2015 at 9:47am 0 Comments

VW Beetle car seat would fail the sleep test. Mine has to be dialed down. I love a bench in a truck on a long ferry ride. It seems I've always looked for a place to nap. At 15 I was a personal care attendant/homemaker. I would do my homework on…

Continue

Local Fundraiser for Ben's Friends

Posted by Scott Orn on March 22, 2015 at 10:29am 0 Comments

I wanted to share some good news from a local fundraiser we did last night in San Francisco. Some friends of mine wanted to support Ben's Friends so they held a "bar night get together for Ben's Friends."

It was a big success as we…

Continue

What Narcolepsy CAN'T take away from me...

Posted by Princess Notso Bright on February 20, 2015 at 3:53pm 1 Comment

Hello my fellow PWN's, my name is Jessica and I have Narcolepsy and Cataplexy. I have suffered with symptoms since I was about 8 or 9 years old but was diagnosed at age 29 in 2014. I decided to become proactive in my search for answers and I started… Continue

Events

© 2015   Created by Bensfriends.org

Badges  |  Report an Issue  |  Terms of Service