Narcolepsy Probs

If only 😴#narcolepsyprobs #snooze

😱 had no idea @Ginger_Zee is part of the #narcolepsy club. This is why silent disorders can be so difficult for the people who have them. They don’t “look” like anything is wrong with them. #morethantired #sleepawarenessmonth #SleepAwarenessWeek

2020 Events and More.... - mailchi.mp/wakeupnarcolep…

You get to interact with fellow PWNs in real-time all from the comfort of your home. Click on this link to join/register for an online support group. supportgroupscentral.com/wun

@matthorsnell #20 all the way

For some people with #narcolepsy it can be 1-18 in a given night. 19 would be on the ground after falling out of bed, 20 would be leaning against the wall after sleep eating, 21 would be falling asleep on the toilet, 22 would be falling off the toilet asleep.

Doctor: are you experiencing any tiredness or fatigue? Me: you mean other than the narcolepsy? 😴 #narcolepsyprobs

@dragonladi6 I don’t! That’s pretty unfortunate to have both!

WHY AM I SUDDENLY STARVING AS SOON AS I TAKE MY XYREM?! #xyremthoughts

@CrimsonKas You’re not alone! Xyrem is so helpful but it has some wild side effects. I get intense cravings for a midnight snack, which is REALLY dangerous. I’ve found sleep meditations are the only way to avoid my wandering thoughts when I take xyrem.

Anyway, I’m obviously not a doctor and not trying to offer medical advice, but rather documenting what I’ve noticed. I felt so alone when this medicine messed me up, so I just want to throw these observations out there. Because of the benefits, I still want to make it work.

XYREM update: A few days after upping my dosage to 6g a night total, I began feeling some bad panic and anxiety. At the same time, my spouse pointed out he’s noticed changes in my behavior. 6g is also where I began noticing benefits, so this whole narcolepsy thing is tricky.

My #narcolepsyprobs game has really been lacking lately. Thx to the sleep meditations and stories from @calm I’ve fallen asleep almost instantly every night, which means no crazy Xyrem tweets 😴

@kells_jensen @calm My pleasure! Narcolepsy can be a really lonely battle if you don’t have a strong support system that understands the struggles!

@NarcolepsyProb @calm Thank you for helping...

Nervous wreck... Got Xyrem on the 20th Dec and said January 1st is my day to begin... it’s the going to be my first dose! I don’t scare easily but this does! Have to watch my blood pressure too!#Narcolepsy#Cataplexy#SleepApnea#Fibro#Stressed#Anxiety#Xyrempatient#

@kells_jensen @calm You do have to pay for it after the first week but I’ve found it’s totally worth it. I used to stay up through my Xyrem at 3.75 ml by just scrolling through social media. Now I’m asleep within 15 minutes of getting in bed!

@NarcolepsyProb @calm Taking so far only at dosage for 2 x 2.25 and takes me an hour to fall asleep and can’t stay asleep so will try it. Usually listen to meditation last nite it was falling snow and rain.. will try @calm

@dragonladi6 I use @calm every night as soon as I get in bed! They have sleep meditations that help you wind down and keep your mind from wandering. That’s always been my biggest problem. As soon as I take my Xyrem my mind starts racing.

@kells_jensen Tip #3: if you have any difficulty falling asleep, try sleep meditations or sleep stories by @calm. I haven’t made it through a sleep story yet! 😴

@kells_jensen Friendly tip: if you get any sudden urges to eat in the middle of the night after taking Xyrem DON’T DO IT.

@kells_jensen At least you’re getting dose #2! I’ve been on Xyrem for 7 years and I often don’t wake up for my 2nd dose.

@NarcolepsyProb Thank you!! I haven’t wanted to eat but I really do miss my glass of milk or chamomile tea right before bed or when I would wake up!! The second swallow is my absolute hardest to get down!

@kells_jensen Tip #2: if you have difficulty waking up for a second dose bc you turn off your alarm in your sleep, set an alarm on Alexa. If you’re awake enough to say “Alexa, stop” you’re more likely to take the dose.

@dragonladi6 😂

If friendly aliens come visit earth how will humans react? #xyremthoughts

@dragonladi6 @meyer_ashley I have a brother and a half sister with narcolepsy. My brother has cataplexy but my sister and I don’t!

@NarcolepsyProb my half sister and I have both been diagnosed!

Anyone out there figure out a cure for narcolepsy yet? Asking for a friend. #sleepy #narcolepsyprobs #naptime 😴