April #Nchat Recap

Thank you so much to everyone who participated this month!  This was the biggest #Nchat so far!  It’s amazing to see word spreading about this opportunity to chat real-time with people with narcolepsy all over the world.  I’m so honored to be a part of it!

The theme for this month’s chat was triggers.  We talked about how stress affects our symptoms, how different we feel during different seasons of the year, and what foods tend to make us sleepier.  With lots of similar answers, you can expect to see some upcoming articles on stress management and healthy eating.  Here is a rundown of the questions and some of the responses.

Q1: Do you find that stress triggers certain symptoms? Which ones? How do you relieve stress?

“Absolutely. If I get upset about something, I need to sleep, immediately. Relieve stress? What?? #medschool #nchat

“ABSOLUTELY! Last night was like running a marathon in my sleep. Even on #Xyrem! (We are moving today.)”

“Stress of any type (good/bad) i.e..Christmas is always hard. Relieve basically by sucking it up (what else is there to do?)”

“I’m more likely to have cataplexy when I’m stressed….”

“Stress causes me to have horrible sleep and #cataplexy. If I could figure out how to make it go away- I’d be a happy camper.”

“Stress = insomnia = more #cataplexy and more #EDS. I have recently learned triangular breathing meditation. It really helps!”

“I also run to help manage stress. Hooray for releasing endorphins.”

“I suppose stress has affected my dreams and HH, I hadn’t thought about it….”

 

Q2: Have you noticed narcolepsy symptoms get better or worse during certain seasons?

“Spring is hard on me because of my allergies- don’t get solid sleep. Winter- the cold makes me want to stay in bed.”

“My symptoms are always worse when I am too warm, so summer is hard, or winter if indoor heat is too high.”

“Not sure…this has been my life for so long w/out a name…that I don’t know.”

“Before Xyrem…spring to fall is when I enter my long sleep phase….”

“The heat and humidity of summer is always hard to deal with, makes more tired.”

“I need to move somewhere that has a constant temperature of 80 degrees.”

“Our son seems to struggle more on dull days… i.e. 3/4 of the year in Ireland!”

“Deffo harder in winter with bad weather, being stuck indoors and no sunshine.”

“I found last summer( my 1st summer on xyrem) I had very little narcolepsy symptoms…winter just knocks me.”

“I hate summer when everyone goes in the hot tub… i have to sit that one out…hot tub makes me narci out in t-2 minutes.”

 

Q3: Does eating a certain food or a certain amount of food increase sleepiness?
“Our lad seems less zonked after a fruit heavy lunch than he is after a sandwich or bread heavy lunch.”

“Carbs of all kinds (even good ones). 3rd week of no/low carbs..it sucks.. would love to try GF (serious challenge in a small town.”

“I’m also cutting down on simple carbs, using whole grains whenever possible and increasing fruits and veggies intake.”

“I recently gave up drinking soda, and I have a hunch the reduction in my sugar intake is probably helping reduce EDS for me.”

“Heavy sugar or caffeine – both make me very sleepy.”

“Turkey dinner makes me sleepy so quick. I don’t eat turkey any other time… i swear it tires me out.”

“Carbs, although delicious, increase sleepiness a lot.”

“So, if all of us know carbs increase sleepiness, we’re all going to restrict them, right? LOL”

Comments

  1. I was sorry to miss this. It’s a wonderful idea and one I hope to be part of next time. Thanks for the recap.

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