Welcome! You are not alone.

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


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.


Birthdays Today

Birthdays Tomorrow

Need a Doctor or Specialist?


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. No Spam
2. No Personal attacks
3. No Offensive content (profanity, sexual references, illegal activity subject matter, pornographic material or photos)
4. No Profanity, sexual references and illegal activity subject matter in the Chat Room.
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. There are many sites for discussing religion and politics. This is not one of them. Divisive posts about religion and politics will be deleted.
Thanks for your cooperation.

Community Moderators

" To Know the Joy of Giving"

Gift Store

ClinicalTrials.gov Studies

Loading… Loading feed


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.



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.


Can you help our newer members?

Started by Nel in General. Last reply by Nel on Wednesday. 4 Replies

Can you briefly outline your narclepsy story for our newer members, many of them newly diagnosed, who are looking for support and information. You must remember when you were given your diagnosis how you wondered what lay ahead. How do you manage…Continue

Nutrition, diet, life style related to health

Started by Ranger in General. Last reply by Nel on Wednesday. 3 Replies

Hello All,  Most of you know already I prefer more natural approaches to health. Relentlessly looking for non "drug" answers.I was diagnosed with:Celiac/"Gluten entropy" disease and many of these "associated conditions" listed here.…Continue

Huffington Post Headline: This Woman's Powerful Video Shows Just How Terrifying Life With Narcolepsy Can Be

Started by Nel in General on Tuesday. 0 Replies

Sarah Elizabeth's video has been reposted over and over again since she spoke up against videos poking fun at Narcolepsy, raising the profile of Narcolepsy probably far beyond her expectations.…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

Nel posted a discussion
4 hours ago

Nel left a comment for Spaceym90
"Hello Spaceym90 and Happy Birthday, The group was very quiet when you joined but there is a lot…"
12 hours ago

Nel left a comment for linrie16
"Hello linrie 16 and Happy Birthday. I hope you still look in on the group from time to time. We…"
12 hours ago

Nel left a comment for SPwithNCinOZ
"Hello Stacey and Happy Birthday. I hope you have a great day. With best birthday wishes Nel"
Scott Orn and dancermom are now friends

Nel replied to Nel's discussion Can you help our newer members?
"Thank you Kristen. I am really touched. I knew of narcolepsy before I joined the group, but all I…"

KristinTMAAF replied to Nel's discussion Can you help our newer members?
"Nel, I think you could find great help even in a Narcolepsy group.  I know it is not the same…"
Ranger liked Ranger's discussion Nutrition, diet, life style related to health

Top Content 

1 Are you alone in your family in having a rare disease?  If not, can you use your awareness to help them?

Are you alone in your family in having a rare disease? If not, can you use your awareness to help them?

Posted by Nel on October 8, 2014

2 Sleep Texting

Sleep Texting

Posted by Carol on October 3, 2014

3 Does Autoreactivity have a Role in Narcoleosy?

Does Autoreactivity have a Role in Narcoleosy?

Posted by Nel on October 13, 2014

4 Finding the silver lining...

Finding the silver lining...

Posted by Princess Notso Bright on September 6, 2014

5 Narcolepsy and ADHD confusion

Narcolepsy and ADHD confusion

Posted by Nel on September 24, 2014



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

xyrem review

Posted by DesnRen on October 16, 2014 at 5:56pm 3 Comments

Hi everybody!!!

I need some input on treating my narcolepsy. Provigik doesn't seem to help, adderral makes me mean and chives me nightmares and Ritalin helps a little but gives me bad jitters. I'm looking at taking Xyrem but would like… Continue

Do I actually believe this???

Posted by tessa1946 on October 4, 2014 at 8:35am 1 Comment

After learning I've had narcolepsy most of my life (I'm 68 years old - diagnosis 4 months ago), my inner chatter has been nearly silent since then. I'm shocked by this information that has required me to reevaluate the long list of misdiagnoses…


Ben's Friends Monthly Newsletter - September 2014 Issue

Posted by Ben Munoz on September 24, 2014 at 9:52am 0 Comments

Just the Stats:

Communities: 38

Friends: 42,500+

In this issue…


Is it a mountain?

Posted by tessa1946 on September 9, 2014 at 10:21am 8 Comments

Up at 4:30 as usual, coffee ready, and assessing the steepness of the day's mountain to be climbed.  It won't be too taxing today since I have a appointment with the sleep doctor - maybe something for sleep - and my husband will drive. If the…



© 2014   Created by Bensfriends.org

Badges  |  Report an Issue  |  Terms of Service