Succeeding despite Idiopathic Hypersomnia

Succeeding Despite Idiopathic Hypersomnia

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When I was a child, my parents used to tell everyone how easy it was to travel with me – I’d just fall asleep. “Sleeping Beauty,” everyone would call me affectionately. But I never outgrew my needs for nap, and it’d irk me when people would comment, “Oh, she just loves her sleep doesn’t she?” “No,” I’d think, “I don’t love my sleep – I just need it.”

Whenever people would talk about what superpower they’d wish for – they always had normal ones like wanting to be able to fly or have super strength – I’d always wish for something relatively boring: I’d wish I didn’t need to sleep. Do you have any idea how much I could accomplish if I didn’t feel so sleepy all the time?!

Sleeping my way through school

My first memory of realizing something being wrong goes all the way back to Grade 1. I remember circle time on the carpet, and no matter how hard I tried to keep my eyes open and focus on the teacher, I’d inevitably lose the battle and nod off.

In Junior High, I remember struggling to stay awake in school all day. At night, I’d go home and sleep earlier to try and prevent it from happening the next day, except the sleep attacks would be even worse. So I’d go to bed even earlier, only to find that I was even sleepier the next day. I’d try the grown up thing and drink coffee or tea, and although sometimes it stopped the yawning, it didn’t take away the fatigue. I quickly realized there was no cure for the sleepiness.

I don’t know how I flew under the radar for so many years, falling asleep in school every single day yet not once was it ever mentioned by a teacher. Perhaps it was because my eyes don’t shut all the way when I sleep (creepy, I know, sorry) or because I still managed to get really good marks. I learned to manage my sleepiness by napping on the way to school, putting my head down at lunch, napping during some classes (sometimes intentional, sometimes I couldn’t help it) and napping on the way back from school and after we got home.

When I started University, I was working part time at a call centre (I’m convinced they’re the best student jobs ever!) for 30 hours a week while taking an 80% course load at school. I managed to do most of my studying at work, and when I got the 6:30 am shifts, I often napped at my desk with my face propped up on my elbow with a book on the desk so it looked like I was studying. I’d nap in the car on breaks and after work ended at 1:30 pm until I had to leave for my 7:30 pm evening class.

The official diagnosis

By this time, I was already a proficient Googler, and based on my symptoms, I was 99.99% sure I had narcolepsy. I had seen the movie Rat Race, with Rowan Atkinson (aka Mr. Bean) depicting a very dramatized version of narcolepsy, and I was sure I had the non-dramatized version.

To all the people who continued to remark how much I loved sleep, I’d indignantly reply that I had a sleep disorder and that I was pretty sure it was narcolepsy. That shut (most of) them up pretty quickly. But I put off getting a diagnosis for several years because I was terrified to lose my license. There was no way I could continue working and going to school without driving and I was pretty good whenever I was driving. Sometimes, I’d start getting sleepy but I’d just take a nap when I parked the car to help ease that desperate need for sleep.

However, after a few years, I got promoted and was working directly for the VP of a large corporation, and try as I might, there were times that I’d have sleep attacks at my desk or in big meetings. Eventually, I caved in and went for all the sleep tests that I had to convince my family doctor to send me for. When the results finally came in, I held my breath and waited to be told I might lose my license now that I was officially narcoleptic. Instead, what he said was that I had idiopathic hypersomnia. He called it a variant of narcolepsy and prescribed Modafinil (Provigil).

The effectiveness of modafinil on idiopathic hypersomnia

I remember the first day I took my first modafinil pill. The doctor wanted to start me off slow, so he gave me 100 mg. I took it on a Saturday morning, and I thought I had discovered the miracle pill. The sleepiness fog was gone, I didn’t have a single sleep attack, and the strong pull for a nap just disappeared. It was the first day in my life that I didn’t take a nap and didn’t need one and I loved every minute of it! By the end of the day, I still had more energy than my normal husband, and he had to beg me to stop doing all the stuff I was so excited I could finally do without stopping for a nap.

By the middle of the next week, the sleep attacks were back, although much less frequent. Over the next few visits, the sleep doctor increased my dosage to 400 mg per day, which is now usually enough to ward off sleep attacks, but not enough to cure the fatigue.

I have recently weaned myself off the pills as Mr. Unchained and I are trying to start a family, and although my sleep doctor has said that I can continue taking them until I test positive, I know it’ll be much harder going from 400 mg a day to 0 overnight versus a gradual reduction.

Succeeding despite Idiopathic Hypersomnia

I have my ups and downs, but I feel incredibly lucky that despite my often debilitating need for sleep, for the most part, I can lead a fairly normal life. Sure, I’ll need (or at least desperately want) a nap every single day for the rest of my life, but I am so fortunate that I am still able to work full time (although I do often spend my lunches napping). I know not everyone with IH can even work because the fatigue is too severe, so for this, I am immensely grateful.

I am also incredibly fortunate and thankful to have such a supportive and accommodating husband who steps up to pick up the slack every time I can’t do my share, and unfortunately this happens way too often. Although things have been pretty good since our one month trip to Asia, this past week has been incredibly difficult. I barely made it through the day at work yesterday, and called in sick for the first time since I started working there last August.

I am an incredibly driven person so having goals really helps to keep me motivated enough to push aside the fatigue. On the morning of Pay Day Fridays, I’m often excited enough that I’m able to get out of bed early to update our finances! Of course, not every day is this good, and after calling in sick today, I proceeded to sleep until 10:30 am. You’d think 12 hours of sleep would be enough, but I later took a 2 hour nap on the couch.

I think part of how I succeed despite the Idiopathic Hypersomnia is also recognizing my limits and respecting them. I could have pushed myself to go to work because unpaid sick leave is a really strong motivator for me, but the fatigue probably would have deteriorated until I needed much more than a day to recuperate. I slept away most of today but I’m sure I’ll be feeling much better by tomorrow, at which point in time I can get back to working hard on achieving our goals!

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Do you have a sleep disorder or know anyone with one? How do you succeed despite Idiopathic Hypersomnia?

Mrs. Unchained 55

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