Life Update Part 2: Diagnosis and Treatment

First and foremost, thank you so much to all my sweet friends and family who reached out after yesterday's post.  Thank you for thinking of me, praying for me, and loving me.  Secondly, I know how very blessed I am and know there are so many people out there facing struggles far worse than I am.  I want to be open with what has been going on so that people don't have to wonder when they see random posts or when they are talking to me and all they get in return is a blank stare (I promise I care what you are saying...I'm just fighting sleep!)  I also share because I literally had no earthly idea this was even a possibility and have spent countless hours reading message boards and articles to make me feel a little more normal!  If one person facing these same issues happens to stumble across this page and feels a little less alone and a little more normal - that would just make my day.

I had a few people ask if I just need to get more rest.  I get plenty of sleep; however, it is rarely (if ever) replenishing/refreshing. I am usually tired again very shortly after waking up.  One site I read compared the daytime sleepiness to how a non-narcoleptic feels after 24-48 hours of no sleep, which I completely agree with.  No matter how much I sleep - I am always tired!

I also get asked quite often how I was diagnosed.  This was a LONG process, which took years to get to.  I felt I was constantly trying to convince people that there was really something wrong.  After several doctor appointments where the issues were really just dismissed, I was prescribed Wellbutrin, which is an antidepressant (and can also be used to treat chronic fatigue syndrome).  Despite explaining to the doctor that I was pretty positive I wasn't depressed, he wanted me to at least give the Wellbutrin a try.  After the initial shock of the drug in my body, I felt nothing.  I gave up taking the medicine after a few months.  Several months later, I visited another doctor who was positive it was a hormonal imbalance due to taking birth control for so many years.  I started using a progesterone cream - nothing... I've gotten my thyroid tested, iron levels tested, cortisol levels tested...nothing.  I gave up going to the doctor for a while, but after getting in the accident and seeing the symptoms get worse and worse I knew it was time to try and figure it out again.  Dr. Swaldi (love love him!!) recommended I go see a neurologist and felt like a sleep study was the next step.

On June 22, I checked in for my sleep study.

Just a few of the wires I was hooked up to

I did polysomnography (sleep is monitored overnight) and a Multiple Sleep Latency Test (sleep is monitored during the day - every 2 hours from 8am-4pm I took a 20 minute nap).  I remember feeling very anxious during the MSLT - I was extremely nervous that I wasn't falling asleep fast enough and that they weren't going to see what they needed to see in order to diagnose me.  Ha.  When I went for my follow-up - Dr. Rarorque's first words were "Man, you really are tired, huh?"  FINALLY - everything I had been telling people for years was validated.  I wasn't crazy. I wasn't making it up.  He explained that it takes a normal person approximately 20 minutes to fall asleep and someone with a sleep disorder approximately 5 minutes.  I was falling asleep in about 1.9 minutes.  Additionally, it takes a normal person about an hour to get into REM sleep, which I enter almost immediately upon falling asleep.  

He advised that we would treat the symptoms with a stimulant during the day.  As of our last appointment, the plan was to start with Provigil and if that didn't work - we'd try Nuvigil, Adderall, Ritalin and then Xyrem.  Xyrem is liquid GHB - Yes...narcoleptics are prescribed the date rape drug.  That is our last resort and something I am praying we can avoid (I was drugged in college and no thank you...)  All of the following information is more for me to have record of.  I was supposed to keep a sleep diary, which I have not done.  Sorry Dr. Rarorque - my brain feels like its going to explode the first 10-15 minutes I'm awake and I'm not interested in trying to pull out a diary to note how many times I woke up and if I remembered my dreams (which are SO WEIRD!) Hopefully in a few years (well, really - hopefully, in a few months) I can look back on this and be feeling as close to normal as possible.

Provigil: Prescribed 200mg (1 pill upon waking, 1 midday)

• 1st few days - Brain. Is. Going. To. Explode
• Not hungry
• Still getting really tired - especially when I typically took naps
• Still no desire to do anything, but could get through a day without naps if needed
• A little obsessive tendencies - could sit and look at something for hours
• Workouts became harder (Before taking Provigil, I was doing a very intense workout - Orange Theory - 4-5 times a week.  I needed a nap before class and it took all my energy away afterwards, but I did pretty good with the workouts.  I went from able to run/sprint to having to walk and lower weights.)
• Waking up became more difficult

Nuvigil: Prescribed 250mg (1 pill upon waking)

• Oh my goodness...so many side-effects.  A lot of people call this the "Miracle Drug" but my experience has been TERRIBLE.
• I spend 1/3 of the day feeling like I'm on speed and someone is tap dancing on my brain, 1/3 of the day feeling pretty good/normal, and 1/3 in a "brain fog" (similar to what I think it would feel like to stay up for 2 days and chug a few Red Bulls.)
• Difficulty thinking of the words I want to use/easily forget what I am trying to do during brain fog periods.
• Left eye feels like its going to explode (dramatic?!) - twitching and pressure
• Waking up has become the worst thing in the world (seriously-I want to cry thinking about waking up in the morning). I have an instant headache and pain in arms and legs.  I also sleep through multiple (like 4) alarms sometimes with absolutely no memory of them going off (I can count the number of times I've overslept or pushed snooze on my hand before this).  This seems to be very common with Xyrem being the only real solution. (Please pray that we can find another solution-this is very scary to me!)
• Pain/tightness in my chest - feels pinched when I breath in
• Workouts are almost impossible (I get dizzy and very out of breath.  My trainer said she would save me a bench in the corner so I'm not embarrassed when I have to sit down.  And I shouldn't worry...she does with her older clients all the time!! So if you go to OTF, you can find me in the corner with the 60+ crew.. Hah)
• Still tired during normal nap times (lunch/after work).  
• Nothing sounds good to eat. I get hungry but can really only eat bland foods. (Even Mac-n-Cheese and queso don't sound good - WHO AM I?!)

Next doctor appointment is September 5th.  Hopefully some relief is on the horizon!!!  Although it seems like it after these two posts and I'm sure some friends/family would agree - I don't want my life to be controlled or defined by narcolepsy.  I promise to share more exciting posts soon and plan to finally blog about our wedding (1 year later!) if you want to continue to check in on us!

If you've read this far - you're the best! This was super long and surely boring!