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 :)

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! :)

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

Friends don't let friends sleep and drive

Driving used to be easy. I was 17 the first time I remember falling asleep while driving. I was on my way home from a shopping trip in Louisville when my eyes closed and I swerved a little. I asked my friend Jennifer to drive and she did. I didn't think I had narcolepsy, I thought that getting drowsy was normal. Fast forward to college when I was 19. My mom saw me completely fall asleep at a stop light and said "what are you doing?!". I had no idea. She asked if that's happened before and I said no. The truth is I didn't know if it had or not. That's when I did my sleep study. 

Even after my sleep diagnosis of narcolepsy driving wasn't really hard. My doctor said I couldn't drive more than two hours alone. I did road trips throughout college with little issues. I usually pull over close my eyes for a minute (this is a micro sleep) then I'm good to go. Now that I'm 26 driving is awful!!! I hate it so much. Even driving to the grocery store is dreadful. I know if I blink too long I'll sleep. My anxiety kicks in to help keep me awake. It's fight or flight baby. 

Yesterday on my way home from my hour commute, I was struggling. I pulled over twice to close my eyes. It was drizzling so the conditions for car accidents in Indiana tend to increase ten fold. I didn't want to risk it. I was supposed to meet Jared on the north side of town for our dog training session but I called him and asked to meet at the house so he could drive. He said yes and asked if I'd like some tea. When I pulled up to the house he had our dog Cadence and my cup of tea. I switched to the passengers side and fell asleep in 2 seconds. I woke up to spilling boiling hot tea on my yoga pants... Awesome. It hurt but I barely woke up. I was too tired to care. I have a small red patch today where I burnt myself. It's a nice little reminder of how everyday occurrences can cause issues with a sleep disorder. 

I have tons of friends who help me out when it comes to driving. I hate it and they know I do. They often volunteer to drive out my way to hang out or come pick me up. My family only lives three miles down the road so they are awesome with me as well. I find it interesting it isn't illegal for people with narcolepsy to drive. Not that I'd want to give up my license altogether but the world would be safer. Every time I get in a car I'm being selfish. I have the potential to hurt someone innocent with my sleep episodes. I guess everyone takes the risk when they get in a car though.

I do take a stimulant which helps. It's these early night winters that really cause me problems.I'm already hoping for spring and summer and it's the first month of winter. Boo. 

Just remember, friends don't let friends sleep and drive!! Or drink or text or act a fool! Be safe out there people! 

Meds and nightmares

I was diagnosed with narcolepsy, classic case with cataplexy in the fall of 2010. I was prescribed Xyrem, a medication which is prescribed GHB. Yup, I'm serious. If you don't know what GHB is, Google it. The street name is Georgia Home Boy. It has a street name. No lies. Anyway I started the medication on a titration schedule, meaning, I started off on a very low dose and built myself up to a stronger steady dose. From night one of Xyrem I knew it was going to cause issues. I fell asleep so fast I didn't have time to comfortably position myself so when I woke up in the middle of the night with the 4 hour alarm I set, my right hand and arm were completely asleep. I had to ask my mom to help me use the restroom. I started getting used to the medication though and used it for about three months without additional problems (which I can discuss at a later time). 

This spring I had the terribly good idea that Xyrem was causing more harm than good and I wanted to get taken off of it. It was a disaster. I was so tired and couldn't cope with the normal persons sleep cycle where you work 8-10 hours a day and still have energy for extracurriculars that I began sleeping in my office. I would take micro sleeps 1-5 minutes at a time. I learned to prop myself up, hands on the keyboard and face near the computer screen. My back faced the door so passer us would honestly think I was working. I don't necessarily think what I was doing was wrong. My coworkers did the same thing but instead of taking naps they checked Facebook, Twitter, reddit, whatever. This seemed to help. A friend I worked with even found a funny word art block decoration for my office that reads, "if you ever get caught sleeping at work just say 'thank you, amen'". Maybe I never got caught or maybe no one really cared but I didn't get fired from that job and life started getting easier. 

This spring I also graduated with my masters degree and was hired as a childhood behavioral therapist for an ABA Therapy provider in Owensboro, Kentucky. I interviewed for the job and asked to work in their Henderson office which at the time didn't have the need for a therapist so I agreed to take the job in Owensboro. That's where my story changes. The drive from my driveway to the work parking lot takes on average 48 minutes. These 48 minutes have become my personal hell. I struggle everyday to make the slow and monotone drive, not once but twice. Needless to say I'm back on Xyrem and I've switched my daily stimulant from Nuvigil to Concerta. Concerta seems to affect my dreams. 

Dreaming under the influence of Xyrem and Concerta is like living in a tim burton meets ZZ top remix. I had a sleep paralysis dream last night where neon black bats flew at my head and sent an electric current through my body and with each shock I knashed my teeth together. The electric current wasn't real, it was from my own mind but the teeth knashing. That was real. This morning my jaw was sore and tired. I'm. Little anxious to go to sleep tonight. I'm worried to have more of these paralyzingly dreams where my mind is asleep but my body is awake. 

Until next time, good night Internet, sweet dreams (hopefully)! Xoxo

The kid napper

I nap so hard you can call me the kidnapper… Because I sleep like a baby.

It took all of my energy to come up with this blog name and that joke. 

So, now I will be going to sleep. I will try to come up with a real blog post shortly. 

I bid you good night and sweet dreams. Xoxo.