November #Nchat Recap: The Road to Diagnosis

Thank you to everyone who attended the November #Nchat on Twitter on November 3rd.  These chats are a great way to share experiences and to ask advice from others who may have been faced with the same problem.  This month, the chat was focused on the road to diagnosis and revealed instances of misdiagnosis, lack of insurance, and a lack of effective treatments.  These factors further emphasize the need to continue funding for research and development of treatments.  Another commonality shown during the chat is that there is a lack of public knowledge about narcolepsy.  In fact, many who attended the chat did not have prior knowledge of the disorder prior to seeing a doctor about troubles with sleeping and/or staying awake.  While this comes as no surprise, especially with the AWAKEN survey results that were published this summer, it illustrates an important need to ramp up awareness efforts, particularly among educators, school staff, and primary care doctors.  With many developing symptoms during school-aged years, it’s important that we help pave the way to earlier intervention by sharing our stories.  We hope you will join us on December 1st for the next #Nchat!

The following is a list of questions that were asked and some of the responses captured:

Q1: When did you, or someone you know, notice signs of a sleeping problem?

“Nobody noticed a thing; I had to figure it out by falling asleep at work and getting fired.”

“My dad noticed I was sleeping lot in my early teens. I remember falling asleep in the car even on short trips even younger.”

“Not staying awake during junior classes, crazy nightmares at night.”

“Sleeping problems started as a kiddo. Not sure when we knew it was actually a ‘problem’ vs. something we ‘dealt with.’”


Q2: What was the first indication that it might be narcolepsy? Did you know about narcolepsy when it was mentioned?

“When I read about what narcolepsy actually was, I was shocked.  What I thought it was was SO wrong.”

“When I found out I had #narcolepsy, I thought it would be just like the movies. I WAS WRONG.”

“I remember feeling so frustrated with how sleepy I was, Googled “narcolepsy” almost half jokingly… Came across the Epworth Sleepiness Scale and was shocked at how high my score was! That’s when I made 1st apt w sleep specialist.”


Q3: Who suggested the diagnosis first?

“My primary doc sent me to a sleep specialist after a year of struggling with sleep aids. After 5 [minutes], he suggested narcolepsy.”

“It had crossed my mind when I was researching EDS. But the first sleep Dr had Dx (diagnosed) me differently…so I was still surprised when my new sleep Dr suggested it was really narcolepsy when he read my sleep study results.”

“The DNA test did all of the diagnosis along w/ cataplexy. I was a sack of misery for about 6 mos, knew life changed forever.”


Q4: What other potential diseases/diagnosis were thrown around first? #Nchat

Nocturnal epilepsy
Idiopathic hypersomnia
Thyroid problems


Q5: Do you think your symptoms have improved overall since diagnosis? #Nchat

“My symptoms ebb and flow still.  It depends on a lot of things like sleep schedule and stress management. Also meds and diet.”

“Nope, they seem to get worse every month.  I still don’t have any meds or insurance. Living in AZ sux.”

“Meds have definitely helped. Not solved everything, but I’m definitely better off day-to day with them than without.”

“Without meds, I have withdrawn. Cataplexy is a huge embarrassment to me. I rarely leave the house, hate large crowds, etc.” (This is one of a few followers that I have with no health insurance.)


If you’d like to provide your answers to this month’s #Nchat questions, please feel free to do so in the comments.




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