Metamorphosis: Need a Diagnosis? Sorry, Sleeping Disorders are Excluded.
The number one take away from living with an invisible chronic disability/illness is undeniably that YOU are your BEST advocate! Only you know your body best. By December 2001, I was experiencing Full Body Collapse from minor emotional arousal: not just at laughter but also selfing with a fictional character. I KNEW I had a major sleep problem, and I got a referral from my then PCP to see a neurologist. The Neurologist, Mom, and I knew I had very severe Narcolepsy with Cataplexy, but you must have a overnight sleep study aka Polysomnography as well as a daytime, 5x nap test called a Multiple Sleep Latency Test (MSLT) which measures whether and how fast you enter REM sleep via your brain waves and if you can recall any dreams. I was relieved we were getting closer to curb my all night sleep paralysis Nightmare on Inception hypnagogic hallucinations. The next day my Mom called sounding upset. Turns out Mom's health insurance plan I was on EXCLUDED sleeping disorders. They refused to cover any kind of sleep study or treatment. OK, there is cellular Death in my Brain, and that is not MEDICAL Enough for you? It was time for me to get strong, be brave and spend my Christmas on Elm St. since I wouldn't be getting a diagnosis, let alone treatment for Narcolepsy with Cataplexy. Yes, I am stubborn and refuse to stop feeling emotion and expressing such with a zestful passion for humor and sarcasm, even though I spilled a half-pint of peppermint ice cream on Mom's couch when the squirrel blasted out of Clark Griswold's makeshift Christmas Tree, or looking like a freak at Walmart running while collapsing trying to break my cataplexy collapse on a pile of boxes, my body tensing and twitching consciously fighting the involuntary paralysis. Oh, the Narcoleptic classic Christmas traditions of Cataplelalaxing down the staircase overhearing my Dad's jokes, as well as that moment I took a sporadic mini nap during the exhausting feat of opening Holiday gifts! Thankfully, My Dad's Health Insurance Plan covered Sleeping Disorders, both diagnostics as well as treatments. The process of cancelling my plan with my Mom, and switching to my Dad's included time to add me, choose a new PCP, see the new PCP, get a referral to Dr. Gregory Foster, a pulmonologist, and finally see Dr. Foster for an appointment.
Given my classic symptomology, he ordered the required diagnostic sleep studies for Narcolepsy; I was going to get my test I longed to get diagnosed. February 2, 2002 was the night I checked into Plano Baylor Hospital's Sleep Lab for a Polysomnography and the MSLT immediately following. The polysomnography went as best can be expected with the 'Medusa' treatment (crazy wires), For the MSLT my instructions were to NOT nap for 2hrs, to stay awake for each 2hr cycle, followed by a nap/attempt to nap. I ate breakfast, several overnight wires were removed (ahhh). I first started to study for my Psychology exam on a desk in the testing room beside the bed. Having a terribly difficult time fighting the sensation of being awake 3days straight, I then turned to watching music videos on MTV. Still fighting the nod monster, I resorted to attempt studying, watching music videos, while marching in place. The first MSLT nap test came, as I did as instructed: lie in bed, attempt to nap, and if you remember any dreams, describe. The second 2hr. MSLT cycle I was back to my triple threat stay awake plan! Study, March to MTV. I vividly remember Alanis Morisette's Hands Clean playing, I was struggling to jog in place to stay awake, when severe cataplexy washed over my body, my body now collapsing backward as I yelled to the front desk cam microphone in my room, "ELP! I aving atapwexy!" "Thud! as I fell backward, paralyzed , hiting the back of my head onto the nightstand behind me, and subsequently the hard tile beneath." The tech came in looking like a deer in headlings as I explained I had just experienced full collapse cataplexy triggered by fighting extreme sleepiness (aka sleep attack), and he helped me stand back up, get back to my feet for the rest of that 2hr cycle. The fourth nap cycle, it was getting so difficult to NOT constantly trigger this severe cataplexy, I resorted to jog around the sleep lab halls as I started to collapse, I made it barely to a chair in the hall, as everyone stared with a freaked out expression watching my will spasming against the extreme cataplexy paralysis. Two of the five MSLT nap tests were positive for narcolepsy with cataplexy, me and my family were right, and finally I could get relief! Dr. Foster started me on 1 Provigil 200mg in the AM to fight sleepiness, and Impramimine for suppressing cataplexy, sleep paralysis, and hypnagogic hallucinations. Prescriptions made my life better, but I was still struggling with my extreme narcolepsy symptomology. It was then that Dr. Foster said he no longer felt comfortable treating me, and referred me to Dr. Phillip Becker, his mentor. Dr. Becker of Sleep Medicine Associates changed me from impramimine to Effexor XR, which really helped my cataplexy. Over the next year we adjusted the Effexor XR and Provigil, when Dr. Becker had me try Xyrem instead of Effexor, and finally I slept with Delta waves for the first time since 9/11. Still having significant cataplexy falls, hypnagogic hallucinations and sleep paralysis, Dr. Becker put me back on EffexorXR. Subsequently, I've been diagnosed with Central Sleep Apnea during REM sleep cycles(brain forgets to breathe occasionally), Fibromyalgia, Rheumatoid Arthritis, and Restless Leg Syndrome. I am now much safer on my current treatments to laugh, fight sleepiness, though I still have cataplexy falls and extended sleep paralysis several times a week. One cataplexy fall, I broke my left foot in three places.
Narcolepsy with Cataplexy has stripped me of the ability to gainfully work, drive, and the horrifying anxiety of needing very expensive orphan medications to function at the level of the average treated person with narcolepsy. Yes, I have fallen asleep in a bed(of rice/beans) in restaurants several occasions. I get exhausted so easily, in a world and American culture which associates the need to sleep and nap with weakness. I have found my passion, my joy, my purpose in becoming a patient advocate for invisible disabilities, Sleepy American. I blog, vlog my stories and knowledge to spread not only awareness but most importantly to inform the not yet diagnosed, comfort the newly diagnosed, and ultimately heavily associate our Narcolepsy with the most scary symptoms the media never fails to exclude and get wrong: cataplexy, sleep paralysis, hypnagogic hallucinations. Sleep Medicine is way behind in becoming common medical knowledge and practice, and I hope to achieve all these goals via Sleepy American and her Justice League.