Narcolepsy Diagnosis- I missed all the warning signs!

Excessive sleepiness is NOT normal

Hello again!  As you may have read in my previous blogs, I collect illnesses.  That sounds horrible but gosh, if I have to have them, the least I can do is joke about them!  My newest addition is Narcolepsy, a disease in which I fall asleep during inappropriate circumstances.
I could remember falling asleep in classes as far back as 7th grade.  It would only be for 2 minutes at a time, and maybe only 3 or 4 episodes a week.  I always figured it was because I did not sleep very well the night before.  I had seen others fall asleep in class, so to me, it seemed normal.  I could also remember having very vivid dreams, and lots of them.

Throughout my high school years, I remained at a constant 3 to 4 episodes of short, inappropriate naps a week.  College was the year that everything started becoming more frequent, however, and I would be snoozing in class on a regular basis.  My naps would consist of no more than 2 minutes, however my eyes would feel so heavy throughout the day that everything would turn to a blur the minute I sat down.  Do not ask me why, but I still did not think anything of these strange experiences.  I just kept blaming everything on lack of sleep.

You have to understand that I was diagnosed with Lupus in 1999, so by then I had attributed any sort of strange symptom that popped up as Lupus related.  Lupus patients often suffer from sleep disorders, so I just lumped myself into one of the statistics.  No need to look further into the situation, as I already get poked and prodded enough each month for bloodwork.

Funny thing is that I NEVER thought that I had any sort of issue with sleeping other than being tired due to my weakened immune system.  It wasn’t until my husband, Brent, had pointed out that I fall asleep during very random situations that I may have a problem other than Lupus or the other two illnesses that I had been diagnosed with as time passed by.  He did many searches on the internet, and came up with Narcolepsy.

I checked out the symptoms of Narcolepsy and my jaw dropped… and then I fell asleep…. Just kidding!  No, really, I checked out the symptoms of Narcolepsy and had found that I was experiencing most of the symptoms!  Still, even with matching my symptoms, it was a strange thought that I could actually have Narcolepsy.  I made an appointment with my primary care doctor immediately, as I had been telling my rheumatologist for years about my extreme sleepiness and she never did anything about it.  My primary care doctor made an appointment for me to have 2 different sleep studies done.

I had symptoms such as falling asleep 7-10 times a day for up to 5 minutes at a time every single day.  I would fall asleep during a phone conversation, while watching a movie, and yes, you guessed it… even then too.  I had even been falling asleep at work on a more consistent basis.  I worked for a medical company and remember answering the phone for a patient, asking her to verify that her house was on fire.  When I dozed off, if I was in the middle of speaking, I would keep on speaking.  My words would become slow, slurred and jumbled.  I would not make a bit of sense.  My head would just bounce as I kept trying to keep my eyes open.  All I can think of is that I must have looked like one very drunk individual!  It was extremely embarrassing to fall asleep in public, but no matter how much I had tried, I could not control it.

The sleep studies were ordered immediately.  The first sleep study, called a Polysomnogram, is an overnight study designed to test how well you sleep at night and if there are any disturbances.  The second study that I had done is called a Multiple Sleep Latency Test (MSLT), which consists of taking 5 short naps consisting of 20 minutes each the following day.  These nap time periods will show if a person is able to fall asleepduring each nap, how quickly, and if they fall into REM sleep.

Well, needless to say, I passed with flying colors.  When I say that I passed, I mean that I fell asleep within the first 3 minutes of the overnight test, slept 93% of the time, and had many long dreams.  The following day I fell asleep during all 5 naps, as I was not allowed to have any caffeine.  I had been using caffeine for years to help me stay awake and was pushing 3 pots of coffee a day.

I did not get my results right away, as they had to be sent out and analyzed by a sleep specialist.  I waited patiently for the doctor’s office to call me and let me know of my results.  The day before the doctor’s office called, I had the worst episode of sleepiness I had ever experienced.  I was at work and my body became heavy, tingly, and numb.  I could barely move my limbs, couldn’t keep my eyes open, and couldn’t talk.  My words were frozen.

When I was finally able to hold my eyes open long enough, I headed straight to the medical clinic inside of work.  I did not tell anyone where I was going, I just booked it.  By the time I got to the clinic I was exhausted again.  I tried to explain what was going on with me but I couldn’t concentrate and my words were slurred.  The nurse on duty checked my vitals, all of which turned out okay, but was worried.  She wanted to call an ambulance because she was unsure of whether or not I was having a stroke.  I could barely move my mouth to talk.

Luckily, Brent worked in the same building with me and I was able to call him to have him bring me to the emergency room.  While in the emergency room, I had every sort of test you could possibly think of done.  All they were able to come up with in the emergency room was a Lupus and Fibromyalgia flare up.  I was so fed up with feeling so tired and having the same response that I grasped for any sort of answer other than a flare up.  I blamed it on the baked potatoes that I had eaten the night before (I always get a stomach ache from them, so why not?).  Brent kept shaking his head and telling me that it wasn’t the potatoes.  He said that they may not have been my best potatoes, but they were not all that horrible!

I was discharged from the hospital with a big fat diagnosis of flare up.  I was told to rest for a couple of days before returning to work and to follow up with my primary care doctor, and to come back if symptoms became worse.  I was starting to think that I was making myself sick, and that this was all in  my head.  How on earth could no one find anything wrong with me other than a stinking flare up?

Well, it just so happened that the very next day I received a phone call from the primary care doctor letting me know that I did in fact have Narcolepsy and that he was referring me to a neurologist/sleep specialist.  It was not Lupus or Fibromyalgia related, and it was not in my head.

I had my appointment with the neurologist/sleep specialist and he had explained to me that what I was experiencing was very normal for a person with Narcolepsy.  Better yet, there were medications that would be able to help me.

Hallelujah!  I was prescribed 200 mg of Provigil to take once to twice daily.  I started it immediately, and within days, I felt like a brand new person.  I did not know what to do with my lively self!  I watched a whole movie, I did not worry about talking on the phone, and I did not fall asleep in the middle of a conversation with Brent.

Provigil has helped me tremendously, however I do find that I need to take it twice daily or halfway through the day I need a nap.  The best part about taking a nap while on Provigil is that I can actually make it to my bed and nap in comfort.

I still have my good days and bad days with Narcolepsy, but I am so grateful that Brent had taken the time to research everything and push me to pursue this diagnosis.  Since being diagnosed I have fired my old rheumatologist and found a wonderful new one who listens to every single concern that I have.  I will not be placed on the back burner anymore for any unusual symptoms that may arise, as this diagnosis could have been made nearly 10 years ago!

Comments 3 comments

Robin R. 6 years ago

Hi, I was both shocked and excited to see someone else but myself with all three of the illnesses I have been battling with for the last 30 years. Lupus, Fibromyalgia and Narcolepsy. Something I noticed you did not mention was that you were also diagnosed with the disease that usually accompanies Narcolepsy, "Cataplexy", even though the symptoms of loss of muscle control (i.e: Slurred speech, looking like you are drunk) are symptoms of Cataplexy and not the Narcolepsy which ONLY makes you sleepy. Do those other symptoms worsen when you experience emotional stress? (Sadness, Happiness, Laughter or frustration) Do your knees buckle when you laugh hard or are extremely tickled with something said or you've done? Does fluorescent lighting effect your Narcolepsy by making you sleepy? Does "fighting" this sleep make you "frustrated", unable to concentrate ultimately resulting in your losing muscle control and looking and acting drunk again? If so ask your doctor about Cataplexy. You probably have it and the medication for this is quite different than is for Narcolepsy. If you have any questions you can email me at rareenterprise@yahoo.com.


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Lissa's World 5 years ago from Florida Author

Hi Robin! I am embarrassed to say that I have lost track of my hub pages for a while... I've been definitely having a hard time with my narcolepsy, which has caused even more fogginess and even alerts in my email box got me flustered!

I'm so sorry, and hope that you see my response! I do have the slurred speech, although I am not sure if the fluorescent lights make me sleepy, as I am just plain old sleepy all the time. I am, however, highly sensitive to the sun and uv lighting!

I am taking your email down, and will email you soon! Thank you, for I've learned a great deal from reading your response!!!

Melissa


Ireallydohaveadisorder 21 months ago

Firsst of all narcolepsy is NOT a disease it is a disorder! Second when you make an appointment to have a sleep study you ARE already seeing a specialist. But OK everyone who gets tired thinks that they have narcolepsy, I have heard it more than I even care to count.

Either your writing stinks or you have just wrote this according to the laundry list of symptoms after reading it on WebMD.

P.S. I really don't find anything funny nor do I think its cute when people diagnose themselves or joke about having this disorder.

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