July Meeting Reminder!

Our next meeting is coming up on Saturday, July 9.


The meeting will, again, be an open forum discussion on Narcolepsy and living with Narcolepsy. It is open to everyone-- patients and their support team members.


For those who can't join us in person, the conference phone number is:


1-866-249-2022, passcode 4897648210#


Last month, our line was miraculously open at 10:30 on the dot. Sadly, we had no callers.

Please join us--your input is invaluable! We hope to see or hear from you all on Saturday, July 9!

June Meeting Recap

We had another excellent meeting this month and were very happy to see some new faces! Although we didn't have any callers on the phone, we were set up and the line was open at 10:30am--hopefully we'll hear from some of you next month!

This meeting was an open forum on narcolepsy, with some focus on diagnosis and misdiagnosis (a couple members mentioned a misdiagnosis of depression before they were finally able to get a correct diagnosis for narcolepsy) and discussion on what medications work for different people. We also talked about very serious side effects some of us have experienced after taking these medications and the patience and time required to find medicines that will work. 

There were some interesting questions regarding pregnancy and narcolepsy that we didn't really have answers for, so if anyone reading this has experience with narcolepsy and pregnancy, please tell us about it in the comments or send us an email and we can share your comments at our next meeting.

We also discussed the pros and cons of telling an employer about narcolepsy and the existing ADA protections for those with narcolepsy; this is such is a difficult issue that completely depends on each individual's circumstances.

Other topics included narcolepsy and driving, narcolepsy and shopping (!), and a study in the journal Sleep Medicine that found that poor sleep habits in children can contribute to aggressive/bullying behaviors. Good sleep is so important!

Our next meeting will be Saturday, July 9--we hope to see you there!

Upcoming Meeting: Saturday, June 4

Our next meeting is this coming Saturday, June 4.


The meeting will be an open forum discussion on Narcolepsy and living with Narcolepsy. It is open to everyone-- patients and their support team members.


For those who can't join us in person, the conference phone number is:


1-866-249-2022, passcode 4897648210#


Please join us--your input is invaluable! We hope to see or hear from you all this Saturday!