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Tired of Hypersomnia

LIFE

14 Dec

Five more minutes.

These are some of my favorite words. Any chance I get a couple more minutes of sleep, I’m going to take it. I’m tired of living with hypersomnia. I’m tired of explaining myself. And the biggest part, I’m tired of feeling like no one on this big flippin’ earth believes me. messy bed with white down comforter


Is it nap time yet?

Six years ago I was sent for a sleep study after struggling with excessive daytime sleepiness for too long. Okay, you’re probably already thinking…that happens to me. I’m tired too. Listen, I’m the first one to understand and respect being tired. My point in this post isn’t to make anyone to feel bad for me because I know I don’t have a bad life, at all. I’m just looking for a little understanding of this invisible disease and how it effects my life.

I was 20 years old and could barely keep my eyes open on my 35 minute drive into work. Never mind, my drive home in the dark after working all day. My mom knew if I was calling it was because I needed someone to help keep me up. I was getting plenty of sleep but it still didn’t matter. Nothing seemed to help. I thought of everything in the book to blame it on. Everyone’s tired – suck it up.

I have a family history of narcolepsy, which is a tad bit different than hypersomnia. After I denied that narcolepsy could be a possibility for some time, my cousin finally convinced me to go for a sleep study. It was around the same age that she was diagnosed after struggling to stay awake for most of her life. I was beyond surprised when I got my results back and she told me that I didn’t have narcolepsy. All I could think was, I knew it. Maybe I had been overreacting, this was normal. Then she told me that I had idiopathic hypersomnia. Yup, I said that too. What the hell is that?

Let me just rest my eyes…

“Idiopathic hypersomnia  is a chronic neurological disorder marked by an insatiable need to sleep that is not eased by a full night’s slumber. People with idiopathic hypersomnia sleep normal or long amounts of time each night but still feel excessively sleepy during the day. They may take long naps, but wake up feeling no better or worse than when they fell asleep.”

As I mentioned, I had to not only complete a sleep study but a multiple sleep latency test which is a daytime test that measures how quickly you fall asleep. It consisted of 5 scheduled 20 minute naps every 2 hours. Falling asleep under 10 minutes was abnormal and under 5 minutes was considered very abnormal. Each nap I fell asleep in under 5 minutes. Easiest test I have EVER had to take!

I slept in, AGAIN.

Here’s a little insight of my day. Each morning I struggle to wake up. I have to set about 8 alarms in hope that one of them will finally push me out of bed. And it’s usually the last one. Once I get up, I scramble to get ready and out the door because once again I slept too late. Even though the entire night before I convinced myself that this morning would be different. I would get up early, maybe even do a workout or how about just do my hair and makeup for work.

Kyle and I usually talk on our way to work which helps me stay awake and keep the mouth open, dazed look to a minimum. Our conversations usually go something like this:

S: “Oh did I tell you about…”
K: “What?” (Bless his soul!)
S: “Oh you know about that…”
S: “What was I talking about?”
K: “You were going to tell me something.”
S: “I forgot what I was going to say”

I wish this was an exaggeration but it’s pretty spot on. My brain seems to always be in a fog. My words are never within reach and sometimes I can’t find the end of my sentences. It’s beyond frustrating. I know what I want to say – I’m just too tired to put it together. Kinda like that first minute after you wake up except mine can last all day.

My bed is calling my name

I get to work and usually around 10 AM I can feel the heaviness of my eyes. It’s a love/hate relationship with the medicine I take to help keep me up. I don’t love the way I feel so I try to push it off as long as I can. People ask what’s wrong or how’s my morning going and I always respond with, “I’m tired.” People are understanding but I get comments back like “you think you’re tired now, wait until you have kids.” And you know what? I have so much sympathy for them. I know how it feels! But for some reason it seems like it’s more acceptable that they would be tired more than me. I’m young, healthy and don’t have any children, I shouldn’t be tired. But I am – every single day.

I usually wait until after lunch to take my medicine because it kills my appetite. I love to eat, so I hate when I feel this way. Once I take my medicine the energy pulses through my body. Literally! My heart starts beating a little faster, my mouth gets all sorts of dry and I try to not let myself talk everyone’s ear off. During this time, I’m awake and focused but deep down, I’m still tired.

I can usually get away with taking one pill a day (I’m very lucky!) but depending on how I feel I’ll take a half for the ride home. The entire ride home I’m convincing myself of everything I’m going to get done tonight. Some extra homework, a workout, the laundry that still needs to be folded. I eat dinner and again, crash. I don’t want to move or do anything. I’m too tired.

Hi – I’m tired.

By now you’re probably really interested in learning something new about me or you might be thinking, who cares about any of this! Let me be clear. I’m by no means writing this post for sympathy or a free pass. I want people to be aware of this because sometimes I feel a little misunderstood.

  • If I yawn while we’re talking, I’m not bored or being rude. I’m tired.
  • When I sneak away to take a 20 minute nap, I’m not trying to isolate myself or be antisocial. I’m tired.
  • That dazed, staring off into the distance look, I promise I’m still listening. I’m just tired.

If you can’t see it, is it really there?

Idiopathic hypersomnia is invisible. I want to thank everyone who has always believed me. Those of you who have talked to me on the phone to help keep me awake, reminded me to take my medicine before we go somewhere and always understands when I just need to take a couple minutes to rest or nap. Thank you from the bottom of my heart.

If you are struggling with idiopathic hypersomnia, narcolepsy or any other kind of sleep disorders I would love to chat with you! And if you’re thinking that you might have a sleep disorder, I highly recommend talking to your medical provider about it to see what the next steps are.

Samantha Marie Blog

9 Comments

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Comments

  1. Brooke Lz says

    July 9, 2018 at 11:21 PM

    Hi Samantha, my name is Brooke. About two months ago, I was diagnosed with idiopathic hypersomnia as well as early signs of narcolepsy at the age of 17. Throughout the past year of my life, I’ve dealt with cataplexy-like episodes where I fall into an unconscious sleep-like state and enter paralysis and can’t be woken up for an hour on average. This led to multiple trips to the ER and countless tests and exams throughout my junior year of high school. Now finally, 8 months later, I have somewhat of an answer. I take two 20mg extended release stimulants a day as well as a small dose of melatonin before bed, and still my days are a constant battle, ESPECIALLY socially. This blog post touched me very personally and made me feel like I am not alone in these daily internal struggles. Thank you for writing this and bringing awareness to the invisible life altering illnesses that are sleep disorders.

    Reply
    • Samantha Marie says

      July 9, 2018 at 11:38 PM

      Hi Brooke! Thank you for sharing your story. I am so happy that you were able to find this post and feel that you’re not alone, even just for a little bit. I understand all of the frustration that goes along with an invisible disorder. Let’s connect on instagram and facebook – I would love to stay in touch with each other.

      Reply
  2. Jessica says

    October 9, 2018 at 11:19 AM

    Hey! Read this this morning and about cried! I was diagnosed about 5 years ago after being tired my whole life! Having the diagnosis has helped some, just by knowing something really is wrong. I struggle daily and some days I feel lost. Knowing there are others out there I had always helped! Thanks again!

    Reply
    • Samantha Marie says

      October 10, 2018 at 6:05 PM

      Hi Jessica!
      It makes my heart so happy that you were able to find this blog post and I’m so sad that you have to deal with the terrible disorder too! I’m always here if you need someone to talk to – I understand.

      Reply
  3. Lauren F says

    April 29, 2019 at 11:17 PM

    I relate to basically every aspect of your story… I was diagnosed with idiopathic hypersomnia last August at 20 years old and I was honestly so relieved to know that I had a real diagnosis and I wasn’t crazy. Even with my stimulants, I am still sleepy.

    Reply
  4. Samantha Wild says

    July 20, 2019 at 8:37 PM

    Hi Samantha! I am laying here in bed knowing how much I need to do around the house, but deciding rest is more important. I used to call my Grandpa when I was falling asleep while driving… but he died three years ago. I was diagnosed last March. I did not educate myself very much, mainly because I did not understand how much my IH affected my cognition. Your blog post hits home to so much of my daily struggles, apart from having three daughters at the time of my diagnosis. I am so happy you have some support from important people in your life! I will take my IHers support for now, maybe now that I am accepting my diagnosis finally (I will call myself lazy constantly) I can begin to spread awareness for us!

    Reply
    • Samantha Marie Blog says

      July 21, 2019 at 3:15 PM

      First off, I’m so sorry about your Grandpa. Thank you so much for taking the time to read my blog post! I’m so glad you could find even just a little bit of comfort in my words. I think once I accepted my diagnosis, I felt a sense of freedom and weight lifted off my shoulder – you deserve that too. I’m always here if you need to vent or someone to just understand what you’re going through.

      Reply
  5. Sydney says

    August 4, 2019 at 10:23 PM

    Hi,
    I was diagnosed with IH about 3 days ago, and I’m still letting it sink in; I’ve been a chronic napper, “lazy”, and exhausted for about 9 years, and I just turned 26. I’m between incredibly relieved–the part where you said “I was beyond surprised when I got my results back and she told me that I didn’t have narcolepsy. All I could think was, I knew it. Maybe I had been overreacting, this was normal” resonated with me and hit me hard–and also so sad that I won’t grow out of it, and it’s just another medication that I have to rely on (also diagnosed with major depressive disorder and anxiety). I’m sad that I’ll never wake up feeling refreshed, and I was talking to a friend and she said, “well, no one wakes up refreshed, everyone relies on coffee or caffeine”, and that made me think, “well, yeah, you’re right, so maybe it still is all in my head”. This is a lot of word vomit, and I’m still processing the diagnosis, so thank you for having this post so that I can attempt to sort out some of my thoughts.

    Reply
  6. Kirsten Crawford says

    July 6, 2020 at 10:40 AM

    Hi,

    I love your post. I’m not diagnosed, but I’ve been struggling with the same symptoms since I was 12. I’m 22 now, and it is difficult holding down a full-time job.

    My dream is to have my own online business, but managing my time is incredibly hard. I need minimum 10 hours a sleep in order to function. I do notice that if I have my minimum (well, sometimes 12-15 hours) that other symptoms such as cognitive symptoms, etc aren’t too bad. Some people are just long-sleepers, but it sucks and I really wish I could sleep less like “normal” people.

    Part of me wonders what is the point in getting diagnosed if no one ever truly feels that great with medication, but maybe if I can afford a sleep study I will!

    I’ve actually researched medical journals for YEARS, and in my free time I am still trying to figure out the best way to manage this illness. I’ve researched chronic inflammation (chronic stress, too), using meditation to reprogram your genes to trigger self-healing, etc. So far, I have to say these are what I’ve mostly been focusing on in my research, and certain things can help. Of course, I’m still struggling with this illness, but hopefully there will be a better way to treat hypersomnia.

    Good luck,

    Kirsty

    Reply

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Samantha Marie

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