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Why a whole section on NARCOLEPSY?
This is because Narcolepsy is a huge part of my life. It has taken me years to figure out how to handle this crazy disorder and yet each day is still a struggle.
Narcolepsy is a sleep-wake disorder that affects me night and day. During the day I fight EXCESSIVE SLEEPINESS and cataplexy. Cataplexy is temporary muscle paralysis triggered by strong emotion. Degrees of paralysis vary from muscle weakness to full body collapse. A cataplexy episode may last anywhere from seconds to minutes depending on the level of excitement and ones ability to control the emotion that triggered the attack. During the night my sleep is very interrupted because my sleep cycle tends to be in REM (rapid eye movement, dream state). Often, I experience sleep paralysis and hypnagogic hallucinations. These are frightening and exhausting. I have a classic, text book case of Narcolepsy. People with Narcolepsy have no or a small number of hypocretin cells in their hypothalamus. We don't know why this is or how these cells died.
Treatment
Thankfully, there are medications that help treat the symptoms of narcolepsy. I take Xyrem (www.xyrem.com ) and two others medicines to treat my narcolepsy and its symptoms. Xyrem is the only med to be approved for the treatment of cataplexy and excessive daytime sleepiness associated with narcolepsy. It is also the only medication to actually address the problem instead of the covering up the symptoms. I am very thankful for these medications. Xyrem especially has made my life much more enjoyable.
Even with 3 medications, it is still not enough for me. I must follow certain "rules" to feel my best. Some days are better than others. Some of these rules are drink lots of water, limit my carbohydrates, stay away from sugar, eat small meals more often, schedule in a nap before important activities, don't over schedule myself, stay away from alcohol. It is also necessary for me to not have important discussions when I am sleepy or after 7pm because my brain doesn't work as well and my patience is nearly non-existent. I am lucky to have supportive family and friends.
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Narcolepsy Awareness
Recently Ive been involved in a Narcolepsy Awareness Campaign. You can find these educational brochures at your local sleep center or order them online from the Narcolepsy Network.
Look for the PSA (public service announcement) on TV. Or watch it here through this link. The commercial starrs Kate Walsh from "Greys Anatomy".  |
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Doggy Narcolepsy... Funny??!! To understand a little more of what Narcolepsy with Cataplexy is like, please watch this video. Its sad but I laugh every time I watch it. This is what I used to look like before I discovered better treatment options. |
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