What Living With Idiopathic Hypersomnia Is Really Like

What Living With Idiopathic Hypersomnia Is Really Like

(I Fell Asleep While Writing This)
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Sleep is my drug; I can’t live without it, I can’t get enough of it, and I crave it every second of every day. To the average person, I might just sound like your typical sleep-deprived college student surviving off of very little shut-eye and numerous shots of espresso. How can sleeping too much be a medical issue? Many times I have been reminded how “blessed” I am that I have no problems falling asleep or staying asleep. Sure, I’m not saying I don’t enjoy dozing off moments after my head hits the pillow, but sometimes I want to be able to fully experience the world beyond the dreams that conspire in my mind. How can I live when all my brain and my body want is to sleep?

It’s called Idiopathic Hypersomnia. I’m guessing you haven’t heard of it, and I don’t blame you for not knowing about such a rare disorder. Everyone seems to know what insomnia is, so when asked what my disorder means, I usually refer to it as the opposite of insomnia; instead of sleeping too little, I sleep too much. Idiopathic Hypersomnia (IH) is commonly defined as excessive daytime sleepiness. My brain is constantly telling me to sleep, but even after hours and hours of resting, I often feel more tired than I did before. On rare occasions, I will feel completely awake, and it is the most amazing feeling ever, something that the average person might take for granted.

Even though my symptoms were not fully apparent until my teenage years, I have always been a tired person. When I was a baby, my mom couldn’t even breastfeed me because I would fall asleep before she got the chance. Once I got older, my tiredness was easily mistaken for laziness, which is ironic because people with IH are the least lazy people that I know. We want so desperately to be able to do what everyone else does, but often times, we just physically and mentally are not capable of keeping up with the busy day-to-day life. I did not find out that I had IH until I had a sleep study done the middle of my senior year of high school. Before that time, my family, friends, and teachers didn’t understand why I would cancel plans, turn in homework late, or sleep all afternoon and still all through the night. Receiving a diagnosis was one of the best moments of my life. Some people might not understand why that is, but for me it was an answer to my problems, and in some ways, it was a solution as well.

Now that I have been diagnosed, I have been on a stimulant called Modafinil. Although it often takes away my appetite, for the most part, it does a decent job of keeping me awake. However, mornings are still the absolute worst. I love mornings, but I often miss them because I can’t will myself out of my bed. Because of this, I requested that my school let me sign up for classes early in order to ensure that I didn’t have any early morning classes. I don’t know if my school didn’t understand the depths of my disorder because they had never heard of it, but I was not welcomed with understanding. In fact, I was told that there was only so much that could be done for me without risking me jeopardizing the system. Well, if you have ever been in college, I’m sure you know that the system is already pretty messed up, but this was just another situation where I felt misunderstood and hopeless.

Sleepy is not a synonym for lazy. I often imagine my life without idiopathic hypersomnia. I think of all the things that I could accomplish, all the challenges that I wouldn’t have to face, and all the mornings that I would be awake for. After I am done feeling sorry for myself, I move on to think about all the things I have accomplished, all the lessons I have learned, and all the relationships I have built not only despite of IH, but also because of IH. All I ask for is understanding. I’m not making excuses, and I’m not being lazy, but I am still trying to just figure this all out. It might take a few (or a lot) of naps along the way, but someday, I hope to get my mornings back.



If you would like to know more about IH, visit hypersomniafoundation.org

Cover Image Credit: Grace Vaughn

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Yes, I Had A Stroke And I'm Only 20

Sometimes bad things happen to good people.
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Recently, I read an article on Cosmo that was written by a woman that had a stroke at the ripe old age of 23. For those of you who don't know, that really doesn't happen. Young people don't have strokes. Some do, but it's so incredibly uncommon that it rarely crosses most people's minds. Her piece was really moving, and I related a lot -- because I had a stroke at 20.

It started as a simple headache. I didn't think much of it because I get headaches pretty often. At the time, I worked for my parents, and I texted my mom to tell her that I'd be late to work because of the pain. I had never experienced a headache like that, but I figured it still wasn't something to worry about. I went about my normal routine, and it steadily got worse. It got to the point that I literally threw up from the pain. My mom told me to take some Tylenol, but I couldn't get to our kitchen. I figured that since I was already in the bathroom, I would just take a shower and hope that the hot steam would relax my muscles, and get rid of my headache. So I turned the water on in the shower, and I waited for it to get hot.

At this point, I was sweating. I've never been that warm in my life. My head was still killing me. I was sitting on the floor of the bathroom, trying to at least cope with the pain. Finally, I decided that I needed to go to the hospital. I picked up my phone to call 911, but I couldn't see the screen. I couldn't read anything. I laid down on the floor and tried to swipe from the lock screen to the emergency call screen, but I couldn't even manage that. My fine motor skills were completely gone. My fingers wouldn't cooperate, even though I knew what buttons needed to be pressed. Instead of swiping to the emergency call screen, I threw my phone across the room. "Okay," I thought, "Large muscle groups are working. Small ones are not".

I tried getting up. That also wasn't happening. I was so unstable that I couldn't stay standing. I tried turning off the running water of the shower, but couldn't move the faucet. Eventually, I gave up on trying to move anywhere. "At what point do I just give up and lie on the floor until someone finds me?" That was the point. I ended up lying on the floor for two hours until my dad came home and found me.

During that two hours, I couldn't hear. My ears were roaring, not even ringing. I tried to yell, but I couldn't form a sentence. I was simply stuck, and couldn't do anything about it. I still had no idea what was going on.

When the ambulance finally got there, they put me on a stretcher and loaded me into the back. "Are you afraid of needles or anything?" asked one EMT. "Terrified," I responded, and she started an IV without hesitation. To this day, I don't know if that word actually came out of my mouth, but I'm so glad she started the IV. She started pumping pain medicine, but it didn't seem to be doing anything.

We got to the hospital, and the doctors there were going to treat me for a migraine and send me on my merry way. This was obviously not a migraine. When I could finally speak again, they kept asking if I was prone to migraines. "I've never had a migraine in my whole life," I would say. "Do you do any drugs?" they would ask. "No," I repeated over and over. At this point, I was fading in and out of consciousness, probably from the pain or the pain medicine.

At one point, I heard the doctors say that they couldn't handle whatever was wrong with me at our local hospital and that I would need to be flown somewhere. They decided on University of Maryland in Baltimore. My parents asked if I wanted them to wait with me or start driving, so I had them leave.

The helicopter arrived soon after, and I was loaded into it. 45 minutes later, I was in Baltimore. That was the last thing I remember. The next thing I remember was being in the hospital two weeks later. I had a drain in my head, a central port, and an IV. I honestly didn't know what had happened to me.

As it turns out, I was born with a blood vessel malformation called an AVM. Blood vessels and arteries are supposed to pass blood to one another smoothly, and mine simply weren't. I basically had a knot of blood vessels in my brain that had swelled and almost burst. There was fluid in my brain that wouldn't drain, which was why my head still hurt so bad. The doctors couldn't see through the blood and fluid to operate, so they were simply monitoring me at that point.

When they could finally see, they went in to embolize my aneurysm and try to kill the AVM. After a successful procedure, my headache was finally starting to subside. It had gone from a 10 on the pain scale (which I don't remember), to a 6 (which was when I had started to be conscious), and then down to a 2.

I went to rehab after I was discharged from the hospital, I went to rehab. There, I learned simple things like how to walk and balance, and we tested my fine motor skills to make sure that I could still play the flute. Rehab was both physically and emotionally difficult. I was constantly exhausted.

I still have a few lingering issues from the whole ordeal. I have a tremor in one hand, and I'm mostly deaf in one ear. I still get headaches sometimes, but that's just my brain getting used to regular blood flow. I sleep a lot and slur my words as I get tired. While I still have a few deficits, I'm lucky to even be alive.

Cover Image Credit: Neve McClymont

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There Is A Science Behind Blacking Out, And It's Actually Scarier Than You Think

Science confirms, blacking out is actually a bigger deal than you think.

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Have you ever woken up from a night out with your friends, confused how you got from Point A to Point B, or wondering why you blew up your ex's phone? Chances are you might have experienced alcohol-induced amnesia, more commonly referred to by college students as "blacking out." Although you have no recollection of what happened last night, this does not mean you passed out or were unconscious, actually, it's very likely that you could've held a conversation with some of your friends throughout the night and acted as if everything was normal.

With social drinking becoming more of a trend, blacking out is not uncommon among young adults, however, it is rather misunderstood.

While blacking out seems harmless and carefree, it is actually very dangerous, especially if your friends are unaware of how much you have had to drink and don't realize that you might need to be watched over.

There are two types of blackouts; en block, also referred to as a complete blackout, is when you wake up with no recollection whatsoever of the events that took place during the time that you were drinking. This occurs when information cannot be transferred from short-term to long-term storage during a drinking episode. You can sufficiently keep information in short-term memory to engage in conversations, drive a car (which you shouldn't do if you've been drinking any amount of alcohol), and participate in other activities. Nonetheless, this information is lost due to the brain's failure to transfer the person's short-term memory to long-term memory storage.

There is also fragmentary-memory loss, which means that you have some memory of some of the events that took place during the time of your drinking. This type of blackout is more common and occur when memory formation is only partially blocked. Unlike complete blackouts, fragmentary blackouts permit the recall of all memories that were stored during the drinking event, however, it might require some prompting or jogging of your memory.

Studies on blackouts show that although alcohol is required to initiate a blackout, alcohol alone (no matter the quantity) is not enough to cause a blackout to occur. Some studies show that it is possible for people to blackout even when they aren't at the peak of their alcohol consumption. There are several factors that affect blacking out, including drinking on an empty stomach or consuming a large quantity of alcohol in a short amount of time, due to the fact that this would raise your blood alcohol content (BAC).

Studies also show that women are at a higher risk for blacking out even if they consume less alcohol than their male counterparts. This is due to the fact that women have less water in their system in comparison to men, causing alcohol to be less diluted in their bloodstream.

Women also have a significantly lower concentration of alcohol dehydrogenase (ADH). Alcohol dehydrogenase (ADH) metabolizes alcohol before it passes into the bloodstream. In turn, women have a higher blood alcohol content and experience greater intoxication than men.

Lastly, women, in general, have more body fat than men. Due to the fact that fat does not directly absorb alcohol, they maintain higher concentrations of alcohol in their bloodstream in comparison to men.

Besides causing damage to your memory, there are several risks associated with blacking out. According to a study performed by the National Institute on Alcohol Abuse and Alcoholism, college students who reported blacking out found that students often participated in risky behaviors such as unprotected sex, driving, and vandalism or destruction of property.

That being said, next time you decide to go out with your friends, remember to drink water and avoid drinking on an empty stomach. Although blacking out has become somewhat of a trend among young drinkers, the risks associated with it aren't worth it.

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