faith · fighter · invisible illness · life · narcolepsy · Patience · spoonie · spoonie community · spoonie life · story · Uncategorized

May Have Struck Gold, Gotta Keep Digging

Years of day-time sleepiness that I chalked up to not getting enough sleep. Too many naps to count, that never made me feel any less tired. The definition of a non-morning person. Those all describe me. Better word for all of that? Narcolepsy.

A couple of weeks ago, I was diagnosed with narcolepsy. Something I never would’ve even considered had my PA not suggested doing a sleep study. To be honest though, I expected to do this sleep study, to again find no answers to my chronic problem. However, it turns out that the average person takes about 10 minutes to fall asleep and about an hour to fall into REM cycle. I, however, being the non-average person that I am, take an average of 2 or less minutes to fall asleep and an average of 1 minute or less to fall into REM sleep. Pretty crazy, right?

My doctors were excited though, because I’ve finally found an answer that’s treatable. Apparently a lot of their headache patients that go to that neurologist and headache center, have narcolepsy. So they prescribed me Adderall and honestly I felt a difference almost immediately.

Apparently, people with narcolepsy never reach restorative sleep, meaning they never actually get rest–even though they are sleeping. So they often wake still extremely tired, never feeling rested. Or maybe they wake with headaches (ahem, ahem, ME!). Most people with narcolepsy don’t know they have narcolepsy. It can be brought on by a trauma, or just onset in childhood. If let diagnosed, that person would be living with chronic fatigue for years and may never know it. And when you’re living in a constant state of fatigue, it affects other parts of your body, like your head. So many people with chronic daily headaches, not so coincidentally, also have narcolepsy. Eventually, the adderall (or whatever other stimulant or narcolepsy medicine) should help the person stay alert and feel awake while also ridding them of their headaches.

But in all discretion, I was doubtful. How many times have doctors seemed sure of a treatment for me only to have it fail? Too many times. But as of now, two weeks into my medication, I am not disabled by my headaches every minute of every day. I feel awake enough and not like I’m in a daze the whole day.

Will this eventually help end my exertion headaches so that I can climb stairs, walk, and exercise without getting a headache? That I don’t know. Will this treatment work for longer than a couple of weeks, and will it take away my headaches that I’ve lived with for 12 years? That, I don’t know. But I do know, that I can hope and have faith that this will work.

To think, so many people giving me a hard time for sleeping in so late and not being a morning person–the whole time I was never truly sleeping.

Here’s to the hope that this treatment will bring concrete and lasting answers for me.

There is a bright light ahead, people.

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