Sleeping Beauty

Well, it looks like I took a 2 year nap from this blog. Ooops! I had actually forgot about it until I was cleaning up my facebook page and I saw that I had "NAP SO HARD" tied to my account. There is some good stuff on here! I'm loving the playlist I made!

But guess what? Two years later and Narcolepsy still sucks. I have a kid now. He is 12 months old and my husband and I are expecting baby #2 in June. Let me tell you, I was tired before pregnancy and motherhood but this is a whole new level of crazy. IT. NEVER. STOPS!

Since getting pregnant in the spring of 2015, I have "lost" 3 jobs. One I was straight up asked to leave. That's illegal, I know. I fought it but they came up with some other excuse. The next was a PRN position but I was having a hard time working only weekends since that was the only time the HUBBY and I got to hang out together. Then when I found out I was pregnant again this summer, my sleep specialist told me "no more driving". Now, I'm working full time at a job I really enjoy! I'm hoping my N and C doesn't interfere. Have any of you every been "let go" for your N or C? Let's talk!

Let's also talk medication. I'm currently taking Modifinal, a generic of Nuvigil. It's working pretty well actually. I was prescribed this after finding out about baby #2. I stopped my Xyrem and Adderall right away but it was too dangerous for me to be off of all medication for long. My sleep specialist, Dr. Watson from Vanderbilt University Hospital has me taking 2.5 mL of Xyrem twice a night and 200 mg of Modifinal in the morning and 100 mg in the afternoon as needed. If you have questions or comments about taking sleep meds while pregnant please let me know and we can talk! It wasn't an easy decision but for me it was the best one.

I want to keep up on this blog because I know there are a plethora of PWN who have A BAZILLION questions (me included) or people who just want to laugh together at the ridiculousness this disorder causes! 

Kool Aid and Xyrem

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 :)