Provisional Diagnosis of Narcolepsy

Unfortunately things move slow in our health service, but just before Christmas I was given a provisional diagnosis of Narcolepsy, following some detailed tests. The MSLT measures how long it takes to fall asleep given the opportunity of a nap.

The Multiple Sleep Latency test, showed :

• 3 sleep onset REM events
  
• A minimum sleep latency of 90 seconds
• Average sleep latency of 4 minutes

These three points alone were enough to show that my level of sleepiness in the day is beyond the normal limits of a non-narcoleptic person. It was the Rapid Eye Movement however occuring within 5 minutes of falling asleep that was strong enough alone to provisionally diagnose me with narcolepsy. Narcolepsy, is a disorder of REM and NREM sleep. Rapid Eye Movement normally occurs some time into a normal sleep cycle, however my REM occurs at the very beginning of sleep, which is not normal.

I fell asleep within 90 seconds at 9am and as it is my sleep attacks come on roughly every three hours, so if I wake at 6am for a normal day in the office, by 9am I'm having a sleep attack.

More Sleep Apnea Tests
I was sent for more apnea tests, to make sure for certain that there are no other sleep disorders involved. My overnight hospital test results showed that I had an AHI of 30, which indicated *severe* sleep apnea.

However upon doing another pulse oximetery test and seeing a sleep disordered breathing specialist, it was pretty clear that I do not have sleep apnea. This guy admitted that my breathing pattern in the night, matches with a typical rapid shift into REM sleep too early. Something is adding up!

More Narcolepsy Tests
Based on all of this we needed to be certain that I do have Narcolepsy and so I was sent for a spinal fluid test at the start of the year, I'm still waiting for these results. The test looks for a chemical in the brain called Orexin, which is lacking in people with Narcolepsy. I've already tested positive for the gene responsible for Narcolepsy.

Pharmaceutical Cocaine
Just before Christmas then I was changed up from Modafinil to Methylphenildate, which acts on the brain in a similar way to Cocaine. Initially I felt a state of euphoria, which did subside as my body got used to the new stimulation to keep me awake. It's so hard to get this medication from my pharmacy and in the early days I was falling asleep while they figured out if I was allowed to have this medication.

You guys may know this medication as Ritalin.


All in all then, anyone would have to be insane to suggest that I don't have Narcolepsy, that I'm making all this up and that this isn't real. I await for the Orexin results and hopefully before the summer is over I can get this medicated. It will allow me to return to work and to gain my driving license back ..... although my struggle for a diagnosis may be coming to a close a whole new battle to get society to accept my disorder is about to begin and that's the part that worries me the most.