So, I have probably mentioned to a lot of people I know that I might have a sleep disorder.
I’ve been waiting to post anything online about it because I have no diagnosis. But in the last few days, I’ve been thinking about this a lot, and I think what has been going on with me for the past few years in regards to sleep is worth talking about.
It’s a long story, so bear with me.
I’ve been taking methylphenidate (a stimulant) to treat my ADHD since I was in elementary school. It’s done wonders for me, though it certainly hasn’t “fixed” my ADHD symptoms (just made them more manageable). I don’t need to justify that this medication works for me, but I will note because it’s relevant to this post that growing up, if I forgot to take my ADHD med for a day, what I would notice as a result was increased ADHD symptoms – I’d be unable to focus, I’d be off-task, and even more hyper than usual.
In early high school, I was diagnosed with Depression and Anxiety. One of my symptoms that I heavily associated with my mental health was insomnia. When I was anxious or depressed, I had really severe insomnia. A month or so after my diagnosis, I started taking medication (an SSRI) and I started therapy soon after. Working toward better mental health has been a long process for me since then.
In eleventh or twelfth grade, much of my insomnia started to disappear. In fact, I had thought “Finally! I’m fixing my sleep schedule because I keep falling asleep around 10 or 11 pm when I want to, and I’m asleep most of the night! I’m getting better!”
Around the same time, I added a medication (an antipsychotic) to help with my anxiety.
Sometime in the next few months, I started to notice that on the days I forgot to take my ADHD medication, I got tired. I initially assumed it was some weird combination of medication interactions, since a possible side-effect of my depression and anxiety meds was sleepiness, my line of reasoning went like this: “My depression and anxiety medications might be making me sleepy, but my ADHD med, being a stimulant, counteracts that, so I’m only experiencing the side-effect when I forget to take that.”
Fast-forward a bit to the summer before my first year of college, when I spent many afternoons after my ADHD med wore off asleep on the couch. The days when my parents would wake me up at 10 or 11 pm to try to get me to go upstairs and sleep in my bed, and sometimes would try to wake me up enough that I’d get up so many times they gave up and just let me sleep on the couch.
Then it’s my first year of college, and at some point “I’m tired when I forget my ADHD med” became “I fall asleep during class without my ADHD med.”
I started falling asleep in my friends’ rooms in the late afternoon if I wasn’t doing an active activity with them. My roommate found me asleep on the floor of our room while I’d been attempting to relax or do homework on my laptop so many times. She also had the struggle to get me into my bed so I wasn’t sleeping on the floor.
Add in the fact that I started to struggle to wake up every morning. No matter how many alarms I set, or how much sleep I got the night before, I would wake up and fall back asleep so many times in the morning that I got used to managing to startle myself out of bed out of sheer panic about being late to class at about 7:52 for my 8 am class every Monday, Wednesday, and Friday. I was often late to that class, or missed it.
If I forgot my ADHD medication in the morning, I’d always know about 45 minutes to an hour after I woke up, because suddenly a fog would hit. I would not be able to think straight, to focus on anything, and all I’d want to do would be to curl up on the floor (regardless of whether or not I was in public) and fall asleep. I have no words to describe how overpowering the urge was. It was not just feeling tired. It was on a completely different level, and it would take all my focus just to stay upright and awake. If I was sitting and unable to speak or move around (such as in class), I would fall asleep sitting up.
There were a few times I would try so hard to stay awake, that when I finally woke up after my forced in-class nap I would look at my notebook and see that I’d been writing normal notes, and then suddenly “stay awake stay awake stay awake” and then a few words of utter nonsense and then a line trailing down the page.
When I fell asleep there was a pattern. Usually the fog would hit, then I’d be struggling to stay awake for about 10-15 minutes, and then I wouldn’t be able to anymore and I’d drift in and out of sleep for a bit, finally feeling awake again about 20-40 minutes later. After that I’d be completely alert like nothing happened, until about an hour or two later, when everything would repeat.
For some reason, none of these things struck me as out of the ordinary. To me, it was simply that I wasn’t fighting hard enough to stay awake, or that I’d forgotten my medication so it was my fault, or that I was unable to get up in the mornings because I was anxious or depressed.
But then, at some point, out of curiosity and sheer frustration, I searched “methylphenidate and sleepiness”.
The first result was that methylphenidate is a drug used to treat both ADHD and narcolepsy.
At this point, my concept of narcolepsy was basically the pop-culture version where you fall asleep standing up all the time and fall down because of it.
So I looked into narcolepsy.
It turns out there are two types.
The first is Narcolepsy Type I, also known as narcolepsy with cataplexy. Cataplexy is the loss of muscle tone that is so often associated with it in pop culture. There is growing evidence that this is actually an autoimmune disease.
But there’s also Narcolepsy Type II, which is also known as narcolepsy without cataplexy. The main symptom of this type of narcolepsy is excessive daytime sleepiness that is sometimes paired with sleep paralysis and hypnagogic hallucinations.
I had no clue what hypnagogic hallucinations were, so I looked it up.
They’re basically hallucinations that occur as you are falling asleep.
This is when I learned that it is not normal to dream during short naps.
When I fell asleep in class, it often began with the events happening in the classroom, and the things being said in lecture being combined with fantasy elements. Sometimes I’d get the sensation I was actually falling, but I was still actually sitting up with my head propped up. I always dreamed during the in-class naps, too, and they were always very vivid dreams, often ones I could remember very specific details of, though usually I would forget them about five minutes after waking up (like most dreams).
I’ve never experienced sleep paralysis, though, and I’m not totally sure what I experience falling asleep counts as a hypnagogic hallucination.
For the daytime sleepiness, I took a pretty standard questionnaire called the Epworth Sleepiness Scale. I scored a 15. For reference, a 0-10 is where a normal and healthy adult scores, 11-14 is mild daytime sleepiness, and 15-17 is moderate daytime sleepiness. 18 and up is severe.
I looked into other sleep disorders, such as chronic fatigue syndrome, which didn’t really fit because I wasn’t always fatigued. Right after what I’m going to refer to as a sleep attack (I did sometimes fall asleep in public spaces on a bench or chair – not just in class, or in my room, or in friends’ rooms), I never felt tired. I felt perfectly alert. Once I’m fully awake in the morning, I feel alert for that grace period of 45 minutes to an hour.
I also learned that it is extremely characteristic of Narcolepsy for the sleep attacks to come in waves, and for you to feel temporarily refreshed after one.
The weird thing is that the easiest time for me to stay awake is past midnight.
Another thing that could’ve been going on was something like sleep apnea or restless leg syndrome.
However, it was the middle of the school year. I was away at college, and away from doctors and places I could do a sleep study, which is what I’d need to do to get anything diagnosed. Due to that, I just grumbled about my problems, speculated, and waited for the end of the school year.
Over this last summer I got a referral to a sleep specialist, who ordered a sleep study for me. Unfortunately, since most of my symptoms were treated when I am on my ADHD medication, she decided that she wanted to see if the medication was effective enough to solve the problem and stop symptoms (which is a yes for when it’s actually in my system, I could’ve told her that).
As a result, she put in a special instruction on my sleep study request for me to take my medications like normal.
Here’s how a sleep study that looks into excessive daytime sleepiness works:
First, you take an overnight polysomnography. If you’ve been tested for sleep apnea, this is the same thing they do for that. You show up to a sleep study lab in the evening, they attach a ton of electrodes to you, and then you go to sleep and they look for any signs of things like restless leg syndrome or sleep apnea.
Once you’ve done that and they’ve ruled out those things, the next day you stay in the sleep lab, and you do what’s called a multiple sleep latency test, or an MSLT.
The MSLT consists of a series of 5 naps, taking place every two hours.
You have to stay awake during the two hours in between, and for each nap you are instructed to try to fall asleep. If you fall asleep within 20 minutes, they wake you up 15 minutes after you fall asleep. If you don’t fall asleep, then they end the nap after 20 minutes.
So I did this. It was torture. And I did it with a stimulant and an SSRI in my system.
I’ll explain this more later, but what they’re measuring in each nap is how long it takes to fall asleep, and whether REM sleep is present in the nap.
My first three naps were during the time the extended release methylphenidate I take is still in effect. The last two were around and after the time it usually wears off.
My results:
- Nap 1: 17 minutes to fall asleep
- Nap 2: Didn’t fall asleep
- Nap 3: Didn’t fall asleep
- Nap 4: 8.5 minutes to fall asleep
- Nap 5: 9 minutes to fall asleep
- No REM sleep recorded in any naps
For reference, most healthy people take 15 minutes or more to fall asleep in these naps (if they even fall asleep), and have no REM sleep.
It turns out, the requirements for a diagnosis of narcolepsy (more on that later) are that you have to have an average of 8 minutes or fewer to fall asleep in the naps, and 2 naps where REM sleep occurs.
It also turns out that SSRIs suppress REM sleep.
If my doctor had not left special instructions, I would’ve had to be off of my depression medication and my ADHD medication for the two weeks before the test.
With the instructions she left, we learned nothing except that I start to fall asleep close to the diagnostic level when my ADHD medication is not in my system. And we learned nothing else.
So, I have to do another sleep study. But I can’t do it until next summer, since I’m not risking going off depression or ADHD meds for two weeks during the school year.
I was able to adjust my ADHD medication so that I take another extended release dose after my first wears off, so I’m not falling asleep in the afternoons as much. I have also worked very hard on being more consistent in taking this medication. This has helped considerably, but I still struggle so much when waking up, before I’ve taken the medication and it’s kicked in, and after about 7 or 8 pm, after my second dose has worn off.
So this is where I’m left in terms of the diagnostic side of things.
But I’ve been doing some research, and I’ve learned a lot about sleep disorders.
Apparently, if you don’t meet the exact requirements in a sleep study for Narcolepsy Type II, but you obviously have hypersomnia, they diagnose you with Idiopathic Hypersomnia. I didn’t even meet that due to my medications being confounding factors.
There was a study done to try to differentiate Narcolepsy Type II (N2) and Idiopathic Hypersomnia (IH), both of which have pretty much unknown causes.
The study showed that if you are diagnosed with N2 in your first sleep study, you have about a 50% chance of being reassigned a diagnosis of IH in a second sleep study. It also showed that if you are diagnosed with IH in your first sleep study, you have about a 50% chance of being reassigned a diagnosis of N2 in a second sleep study. It also showed that many people who test positive for either of these in their first sleep study test negative in their second, and vice versa.
The diagnostic criteria for these sleep disorders are arbitrary and inaccurate.
The test itself isn’t even designed that well. Think about it – if you relatively unpredictably fall asleep during the day, why in the world does the test to prove that rely on you staying awake for 2 hours in between each nap (at risk of the test being invalidated), and then falling asleep on command during a 20 minute period?
Many people wait 10-15 years or more since their symptoms started to receive a diagnosis of either N2 or IH.
Okay, so that’s the medical side of things. I have my own theories about what may be causing my sleep issues (there’s a possible link between a molecule that people with MTHFR gene mutations don’t produce as much of and Narcolepsy, and I do have an MTHFR mutation, though there’s not really any research on links between Narcolepsy and MTHFR), but at this point I’m just waiting.
So I’m going to end with the interpersonal side of things.
My sleep issues are hard to talk about and explain. When I tell people I struggle with waking up, they try to offer helpful suggestions about creative alarms and strategies for waking up. The problem isn’t in how I’m trying to wake up, the problem is waking up consistently. Trust me, I’ve tried so many things.
Sometimes people don’t understand at all that I’m talking about something much more severe than simply being tired. My problems are exacerbated when I don’t get enough sleep, but they are there regardless of how well-rested I am or have been in the days before.
Some people seem to think I’m making excuses, that I’m not trying.
I struggle every morning. I fell asleep during one of my finals fall semester because I didn’t take my med until 5 minutes before the exam. I still fall asleep in my friends’ rooms, sometimes in the ten seconds it takes for a game to load on my phone. I worry every night about whether or not I’ll wake up on time for my classes, even if my first one is at 11 am.
So when I say “I might have a sleep disorder,” this whole post is what I mean.
It’s so hard to explain everything succinctly, so I’m posting this to try to improve understanding. I’m not sleepy or sleeping all the time because I want to or because I’m going to bed too late (though sometimes I do, like most of everyone in college).
I probably know what’s going on and what sleep disorder I have, but I am unable to get an official diagnostic answer yet, so I can’t just say that. I may not get one for years or decades, considering the troubles even people with more severe cases have getting one. I’m lucky my ADHD med takes care of much of the problem, even if I still struggle so much.
Please bear with me while I continue to figure this out.
Thank you for reading.
Atalina's World 