Not Just Tired: 25-Years-Old and Diagnosed with Narcrolepsy

January 16, 2016

My name is Ashley and I’m a  25-year-old hair stylist here. This is my story.

About five  years or so ago I started to realize I was really tired–like abnormally tired–to the point where I couldn’t keep myself awake. So I went to my doctor and he said it was a viral infection and that I could just sleep it off. I listened, I gave that a couple of weeks. After no success, I went back and he did a whole bunch of test on me.

And then everything came back normal.

I tried to  just ignore my issues for a while, until things started happening to me in daily basis. I would travel 30 to 40 minutes to work and I would space out and have to figure out where I was or how I even got to work. That started to to scare me. Also emotions would make me exhausted and make me want to fall asleep. Coffee, espresso and energy drinks would keep me awake for about an hour or less and then I would crash hard. Sleeping at night, I would wake up 4-6 times a night, but I can fall asleep under 2 minutes. I would take long periods of naps. I could sleep 18 hours a day. Also sometimes at night I would wake up to seeing something that’s not even there.

After years of ignoring,this April 2015 I decided to see another doctor who actually listened to me and said something is making me this tired and we need to know why. So his next step was to get me in with a sleep study doctor. And so I went. At first, they thought I had sleep apnea since my mother has it. I brought the test home and brought the sleep test back the next day and after a week I got the results.

The result was that I didn’t have sleep apnea. So they wanted me to come back and talk. So I went back and told him everything that had happened. He said I might have a mild case of narcolepsy and wanted me to come back. The first test was at night to double make sure I didn’t have sleep apnea then the following day I would take five separate naps 20 minutes each. Each nap I had fallen asleep 2 minutes into the nap. The result of this I had narcolepsy.

I was put on something called Nuvigil I tried it out for a couple of weeks. It worked but it also made me very angry and I found myself lashing out. Normally I’m a calm person. I also was working till about nine at night and that’s when the pill would stop working and I woukd have a crash and want to fall asleep.

Then I was prescribed Ritalin I went up to 60mlg a day and was still very tired. I found out in June I was pregnant so I stopped all medication now being December 2015 pregnant and having narcolepsy I have learned to cope and try new things. I changed my schedule to morning and I can have 200 MG of caffeine a day. So I do that in the morning.

When I get home from work around four in the afternoon I take a nice nap. Then go on my day. I decided not to breast feed because I would like to be back on my medication for narcolepsy to be more awake to be a better parent. Without having my medication now and compare to the the few months on the medication changed me. I was mostly awake and focused and now being a soon to be mom I need that again. My advice for anyone going through something like this it might take years but you will find out just keep your head up.

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