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Lucky To Be Alive - Passed Out Behind The Wheel, Narcolepsy Diagnosis Followed

by Karen
(Santa Fe, NM)

Driving on the highway in the spring of 2009 I inexplicably 'passed out' behind the wheel.

I vaguely recall the sound of a car horn and the sound of rough pavement indicating I was was driving on the shoulder. My car went air borne and landed in a ditch.

When I regained consciousness I was aware of excruciating pain in my lower back. I confirmed that I could move my legs and then turned my attention to getting my car back on the highway and driving home because I had an "important" meeting at work. A passing truck driver - who strongly advised against it - nonetheless instructed me how to drive up and out of the deep ditch. Amazingly none of my tires had blown out.

During the more than one hour drive I realized I would be lucky to make it home and must get immediate medical attention. A hospital exam showed that I had two fractured vertebrae. It was determined that surgery would be dangerous and it would be best for the vertebrae to heal in place. I was hospitalized for several days, confined to bed for many more and wore a full body brace for five months as the vertebrae healed and knitted together. I was grateful that I had injured no one else.

Next began the lengthy investigation into why I had lost consciousness. I lived near a major medical center. Numerous neurological and cardiac tests followed with no answers. In retrospect I could see that several other accidents over the past few years had been similar. Another, less serious, car accident. A fall down a terrazzo staircase that had left me with a bruised larynx from my throat striking the iron railing as I fell and another fall down outdoor stairs that shattered my foot, breaking even the solid internal cubic bone. In each case I could not explain 'why' the incident happened and because I was alone, I didn't know how long I had been unconscious. I quit driving for several months until the neurologist said that since I'd had no more "black-outs" it was probably okay to
resume driving.

Five years after my serious car accident I had my first 'witnessed' event. I sat down for dinner at home with my boyfriend. He reports that I suddenly began to speak gibberish (similar to my sleep-talking), my head dropped to my chest and I was unresponsive. He called 911 and I was taken to the ER. I was out for 30-40 minutes.

Within weeks I went to the sleep center at The Mayo. After 2 visits it was determined that I have narcolepsy.

I began taking modafinil and adderall. My daytime sleepiness abated. I didn't fall asleep riding in the car or airplane. I thought my condition was controlled.

Then yesterday, just two years later, it happened again. My boyfriend found me slumped in a chair, unresponsive. He once again called for help and I was taken to the ER. I was unresponsive for 30-40 minutes. The next day I still feel weak in the legs and woozy.

During all my life I have suffered from insomnia and sleepiness. While working evenings for many years as a television news anchor I would 'steal' naps whenever possible. I would nod off while driving home on my long commute. I would fall asleep while being driven to a news assignment. I would begin every visit to every doctor with the complaint of being 'so tired'. It was always attributed to the stresses of my lifestyle whether it was child-rearing, or work or changing jobs. Others complained of my sleep-talking and crying out in my sleep. I developed periodic limb movement disorder and was prescribed Pramipexole. I was given Ambien for insomnia.

Because I didn't realize it was unusual, I never told any doctor about my experiences with momentary paralysis, or hallucinations while falling asleep or waking up. I just assumed that happened to everyone. The doctors at the Mayo told me those were classic narcolepsy symptoms. I do not have cataplexy and am otherwise in very good health.

Now I feel like I'm back to 'square one'. I cannot drive. And I no longer have confidence in my medical regimen or even my diagnosis of narcolepsy.

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