Finding Support

I was diagnosed with narcolepsy (my new doctor calls it hypersomnia) during my quest to discover a reason for my muscle problems.

Narcolepsy symptoms

After experiencing double vision, weakness in my arms and legs, constant pain from minor to severe, and blood tests that said my muscles were "breaking down", I was finally referred to a neurologist. During visits to one neurologist I mentioned how I have had to use NoDoz to help stay awake since my school days and that caffeine had no effect on me, I was referred to a sleep doctor.

Finding a sleep doctor

She found my case intriguing and especially since I not only had narcolepsy in my family history but also as a result of my muscle disease. During the years I have been on Nuvigil and she has tried my on numerous methophyenidate type medications to try to give me a little more awake time during the day, but to no avail.

After DNA tests, and muscle biopsies I was finally diagnosed with Myotonic Dystrophy. So my body hurt and I couldn't stay awake.

Added to my daily routine of Nuvigil I added Lyrica, Wellbutrin, etc.

My neurologist did little over the years except to say she didn't have any medications to help the Myotonic Dystrophy but I stayed with my sleep doctor over the years.

Trusted HCP helps manage narcolepsy

She was compassionate, our office visits often ended with a hug, patient and understanding when I became a widow, and always cared about how frustrating it was to not be able to stay awake. I followed her through several of her changes to different medical facilities until her last change to a VA Hospital meant she could no longer be my provider.

My new doctor is very nice. He conducted a new sleep study, discovered I had over 29 "episodes" an hour and started me on my CPAP and has assured me I'll be able to stop taking all my stay-awake med because of it. I think HE'S dreaming--I've fallen asleep twice while trying to type this post.

Managing narcolepsy still isn't easy

So, add to my Myotonic Dystrophy, narcolepsy, depression, and complete apathy about doing anything most of my days are spent asleep in my recliner not caring if I wash my face, eat or even turn on the TV. Going to stop writing before I fall asleep again. But, I think you get the picture.