I began experiencing my symptoms of Narcolepsy in 2003 after a Craniotomy to remove and biopsy a lesion in my Hypothalamus. The biopsy revealed that the lesion was a Hypothalamic Hamartoma, and would only require annual MRI's to monitor for any "changes". I will tell the story of my Brain Surgery later, but I had none of my Narcolepsy symptoms until after the surgery. This presentation is classified as Secondary Narcolepsy.
I say "my symptoms" and "my Narcolepsy" for two reasons. First, Narcolepsy has many symptoms and everyone with Narcolepsy has a different combination of symptoms. Also, these symptoms also manifest in different ways and are always experienced from a unique individual perspective.
There are many factors that contributed to my Narcolepsy taking 6 years to diagnose.
The major factor was not being able to have consistent follow-up after my surgery. I did not have health insurance for many of those 6 six years. A few months after my surgery I lost my job. It was mainly due to stupid mistakes that I was making at the end of the day. It is only now that I am able to look back and realize that these mistakes were due to the development of my Narcolepsy. I then went back to school and with my past medical history I was unable to find/afford health insurance.
It was not until 2007 that I had a full time job with Health Insurance. At this time my symptoms had been fairly consistent for about 3 years. My symptoms primarily include: Excessive Daytime Sleepiness (EDS), Hypnagogic Hallucinations, and Sleep Paralysis. I will discuss how I experienced each of these symptoms in separate posts - I want to get to the YARN! Both the Neurosurgeon and Neuroendocrinologist I saw at this time missed opportunities to refer me to a Sleep Specialist. They are both very good doctors who have saved and improved countless lives. I am not going to "out" them publicly. I do not want to do anything that might impede all of their good work.
In June I finally snapped out of my denial. I realized that I was only able to function at my full time job by consuming copious amounts of caffeine and participating in very few other activities. Occasionally I was able to attend a Wednesday night knitting group, but sadly that was about it. I was also curious to see what my rather strange presentation of Sleep Paralysis looked like on Polysomnography.
In July I saw a Sleep Specialist who ordered an overnight sleep study followed by a Multiple Sleep Latency Test (MSLT). Both tests were "dramatic" for Narcolepsy. I will blog more about these tests and my results in the later post. I know it isn't a contest, but my MSLT results are the most "dramatic". Basically they monitor your brain waves over a series of 20 minute naps spaced about 2 hours apart. They then calculate the average time it takes you to reach the first stage of sleep (fall asleep). They also evaluate the data to see if you reach REM stage sleep during these naps.
The MSLT is considered positive for Narcolepsy if it takes you an average of less than 8 minutes to fall asleep and if there is REM stage in at least 2 of the naps. (MSLT criteria found here)
My MSLT consisted of 4 naps. I fell asleep in an average of 1.4 minutes AND there was REM stage in ALL 4 naps. DRAMATIC!!!!!!
It did take me a few months to realize that the care I was receiving from my sleep doctor was inadequate. Narcolepsy is very rare and it takes most people with Narcolepsy some time to find adequate care. Secondary Narcolepsy is also very rare, accounting for less than 1% of all Narcolepsy cases. There are no Narcolepsy experts in my state. Two weeks ago I began a medical leave of absence from my job (fingers crossed that I am approved for FMLA and Short Term Disability) so that I can establish the care and treatment I need. I found a Narcolepsy expert with experience and interest in Secondary Narcolepsy. I feel very lucky that he is only 2.5 hours away in the next state. I have also been able to establish care with a Behavioral Psychologist who specializes in Sleep Disorders, and he blogs!!!!
It this point, I feel very lucky. I have no doubt that I am on the right to get the absolute best care and treatment possible. However, I work in Health Care. I have a base of knowledge that allows me to advocate for myself in a way that other people may not. (Please see notes at end of post.)
I NEVER GOT TO THE KNITTING!!!!!!! Well, something tells me that if you were only interested in knitting you probably never got this far into the post. Next post - only knitting!!! (Well, except that my current project is a very special afghan, which will actually be crocheted.....)
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