I have been taking Xyrem for the last 4-5 years and I had NEVER thought of adding a flavoring to the nasty medication! what!? I was on a FB page Xyrem support group page and another group member made a post that said "Okay everyone, let's play a game. Show us your flavor!" WOAH! Mind officially blown on these one fellow PWNs.
I even have that same Kool-Aid liquid! The best part is there are tons of options Crystal Light, Powerade and Vitamin Water all have these kind of "drops" you can put in the Xyrem bottles. I tried it last night and it was so good! There's still that hint of salt water but it's covered up by the sweetness. I was able to shoot it down in one gulp :) I woke up without that crazy taste in my mouth this morning. I call it my narcolepsy breath.
Now here's the thing, from what my doctor has told me you shouldn't mix Xyrem with another type of liquid other than water such as tea, lemonade, soft drinks, milk. That is because the different ingredients in these drinks can slow down the absorption of Xyrem and too much sugar while trying to fall asleep is an obvious "duh"! You still mix the Xyrem with water but add a few drops into the containers when you're done filling them up. Next time I'm at the store, I will make sure the drops I get don't have a high sugar content. I personally continue to have dreams while on Xyrem and I don't want to make them even crazier with lots of sugar in my system.
So there it is! A simple solution to a nasty medication... I hope someone is able to benefit from this information. Please add comments below and subscribe if you like this blog :)
Wednesday, January 21, 2015
Monday, January 12, 2015
Narcolepsy Playlist ZzZzzzzz
This is a fun list of music that I think goes well with having Narcolepsy. It's not meant to put you to sleep- if you have N it doesn't matter what you listen to in order to fall asleep! haha
ENJOY!
https://www.youtube.com/watch?v=na1OdO30Yp8
Sleepy Head, Passion Pit
https://www.youtube.com/watch?v=m9yFxAYDEvI
Narcolepsy, Third Eye Blind
https://www.youtube.com/watch?v=s8m5sxlh370
Roger Rabbit, Sleeping with Sirens
https://www.youtube.com/watch?v=bl94G9AC6uM
Sleeping Behind the Wheel, Matchbox 20
https://www.youtube.com/watch?v=fLexgOxsZu0
Lazy Song, Bruno Mars
https://www.youtube.com/watch?v=hHRNSeuvzlM
Dream On, Aerosmith
https://www.youtube.com/watch?v=pbQGiMK5Qdw
Sleep of No Dreaming, Porcupine Tree
https://www.youtube.com/watch?v=QrPoXHLIkPc
Mr. Sandman Remix, Desert Eagles, originally The Cordettes
https://www.youtube.com/watch?v=Bs5-klTyb9o
Losing Sleep, John Newman
https://www.youtube.com/watch?v=hT_nvWreIhg
Counting Stars, One Republic
https://www.youtube.com/watch?v=e_aNKCcOOY0
Sleep Forever, Portugal. The Man.
Let me know if you think of anymore! :)
ENJOY!
https://www.youtube.com/watch?v=na1OdO30Yp8
Sleepy Head, Passion Pit
https://www.youtube.com/watch?v=m9yFxAYDEvI
Narcolepsy, Third Eye Blind
https://www.youtube.com/watch?v=s8m5sxlh370
Roger Rabbit, Sleeping with Sirens
https://www.youtube.com/watch?v=bl94G9AC6uM
Sleeping Behind the Wheel, Matchbox 20
https://www.youtube.com/watch?v=fLexgOxsZu0
Lazy Song, Bruno Mars
https://www.youtube.com/watch?v=hHRNSeuvzlM
Dream On, Aerosmith
https://www.youtube.com/watch?v=pbQGiMK5Qdw
Sleep of No Dreaming, Porcupine Tree
https://www.youtube.com/watch?v=QrPoXHLIkPc
Mr. Sandman Remix, Desert Eagles, originally The Cordettes
https://www.youtube.com/watch?v=Bs5-klTyb9o
Losing Sleep, John Newman
https://www.youtube.com/watch?v=hT_nvWreIhg
Counting Stars, One Republic
https://www.youtube.com/watch?v=e_aNKCcOOY0
Sleep Forever, Portugal. The Man.
Let me know if you think of anymore! :)
Saturday, January 10, 2015
First Evansville Narcolepsy Support Group Meeting = SUCCESS!
Where: Evansville Old Chicago Restaurant
When: Jan. 10 @ 6:00
Who: 4 group members and their partners
Why: because we're awesome, love pizza an want to share our experiences
I had so much fun getting together with some fellow sleepy heads to talk about our sleep disorders and how it effects multiple areas of our lives. There is something special communing with others who know where you're coming from without judgement or hesitation.
We made new connections on other auto immune disorders, histamine issues, vitamin deficiencies and common side effects and symptoms.
We are hoping to have others join us for the next meeting soon. We'd like to come up with an event to raise awareness for narcolepsy. An idea we had was bed races!! Literally putting wheels on a bed and racing them. Hilarious! I like the idea of PJ bowling:)
I'm so very happy to have made new friends who know where I'm coming from. I'm not crazy, lazy, pathetic or helpless. I'm a warrior just trying to make it through this crazy life with narcolepsy.
One member stated the sleepiness part of narcolepsy isn't the main problem but the most talked about. I want people to know we are dealing with many other issues such as weight gain, shaky hands, cataplexy, anxiety, social phobia, forgetfulness, vitamin deficiency and prone to additional auto immune disorders.
Let me know if you'd like to join us on our next adventure!! It was a blasty blast
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