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Narcolepsy: Mixed Test Results

by John J.
(Overland Park, KS)

I am a 57 year old married male about 25 lbs overweight. For almost 45+ years of my 57 years of existence, I have always been a night owl and needed to take a nap if I was reading or watching TV. For 35+ years, I could not get out of bed feeling awake and refreshed from 9-11 hours sleep and I was tired and fatigued throughout the day and exhausted by end of the week.

In 2005, I was diagnosed with RLS and sleep apnea and started medication and C-PAP. I eventually started sleeping less at night and woke up more refreshed in the morning, waking up with less help from multiple reminders from alarm that it is time to get up. While I now was feeling better about my night time sleep, I began having trouble sleeping with a C-PAP as it disturbed my ability to sleep at night because of comfort and extreme dry mouth despite efforts to resolve those issues with various equipment and methods. Finally, because of my mild to moderate sleep apnea, my sleep specialist has allowed me to use a dental sleep appliance which has been a true blessing.

However despite my improvement in nighttime sleep, I was still suffering from day sleepiness, brain fog, fatigue, and auto functioning. I did a daytime sleep test in 2007 and completed only 4 of 5 phases because I was in REM in less than 2 minutes and I was diagnosed with narcolepsy to go along with my RLS and sleep apnea. I went through all the drugs available for narcolepsy with only a short period of temporary improvement. Narcolepsy and increased demands of my job of 35 years forced me to take early retirement and seek out new solutions to my narcolepsy symptoms.

For the last 8 years my sleep treatments have been diagnosed and treated by a pulmonary and
respiratory doctor specializing in sleep disorders. As my studying on narcolepsy continued and I learned that it involved brain chemistry, I tried to seek out a neurologist that specialized in sleep disorders. My research of various websites brought up only one doctor in my 2 state area and he was 250 miles away from me.

I bit the bullet and traveled to see him for a second opinion. He had me do all the tests, sleep diary, questionnaire, activity watch and the nighttime and daytime sleep test. The results, I did not show any REM sleep in daytime test and he was concerned about my oxygen levels from nighttime sleep and the need to look at my respiratory system for possible causes. I knew that I had always had borderline oxygen issues even with C-PAP and I have made only 2 adjustments to my dental appliance so I thought there was room for adjustment to it to improve my nighttime breathing and oxygen levels.

But I was most shocked by his conclusion that I did not show signs of narcolepsy in the daytime study EVEN THOUGH I EXPERIENCED SLEEP PARALYSIS IN EACH OF THE 5 SEGMENTS OF THE TEST! Now I am puzzled what to do next as I applied for social security disability based on the first diagnosis of narcolepsy and expected the second opinion to boost that diagnosis. How is it possible I have the same symptoms of narcolepsy but my second test is negative?

I know stress can be a contributing factor in narcolepsy, can the fact that I am no longer working in my past high pressure job change my measurable symptoms of narcolepsy? Would a hypocretin's test be a benefit to me having received mixed results from my narcolepsy testing? Are there any other observations you can share with me about what you have read about my case? Thanks for your help.

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