What started as a series of sleep and nap studies ended in me getting parts of my life back, some of which I hadn’t realized were missing.
In a similar fashion to my ASD diagnosis—where I described the road to diagnosis as “a journey of good luck, strange happenstance, and unexpectedly compassionate therapists“—serendipity, happenstance, and listening to my gut also led to my being diagnosed with ADD (Attention Deficit Disorder).
Confused? I don’t blame you. Here’s what happened:
(Feel free to skip this next section if you just want to read about my Ritalin experience.)
HOW A SLEEP DISORDER DIAGNOSIS LED TO AN ADD DIAGNOSIS
“Sleep disorder, unspecified. Hypersomnia.” I looked down at the sleep study report the doctor had just handed to me. Underneath a big block of medical lingo were those two lines that I squinted at with confusion.
“Hypersomnia?” I asked. “So… like the opposite of ‘insomnia’? You’d said I probably had narcolepsy. Why is the sleep disorder unspecified?”
“Yes, exactly,” she replied. “Based on your nap study, we can see that you clearly have extreme excessive daytime sleepiness and difficulty remaining awake. We suspected narcolepsy, but you didn’t enter REM sleep in your nap trials, despite falling asleep very rapidly in all of them. But regardless, the treatment will be the same as it would for narcolepsy. I’m going to prescribe you a drug called ‘Provigil.’ It’s commonly prescribed for shift workers and narcoleptics. I had a narcoleptic woman start taking it recently and she said it changed her life!”
As I held the first dose, I was anxious, but excited. This medicine had the potential to “fix” me—at least for a while at a time.
I finally worked up the courage to take it, then got busy while waiting the 30-60 minutes it would take to work. In about 30 minutes, I felt an extreme lethargy slowly washing over me. I became even more drowsy than usual, and began to enter a numb shutdown mode.
I felt like I had dived into a deep pool; everything was muffled and cold around me, but I slowly surfaced back up to alertness as the medicine wore off.
The next day, I was determined to try again. “A fluke,” I thought. “I was just too nervous when I took it.” But the same thing happened. It made me feel so strange, having the complete opposite reaction to something.
One text to a family friend (who’s a pharmacist) later, and I had my answer. “Paradoxical reaction/effect” was a real thing! I wasn’t imagining it. It was a rare side effect (2% kind of rare), but it was real and it had happened to others. My doctors told me to stop taking the medicine immediately.
The reaction led me to researching paradoxical reactions, reading about stimulants, and searching on forums for others with similar reactions. I found that some people with ADHD/ADD had had similar reactions. Many of the experiences they described sounded like lines written from my own life. I started to wonder if ADD could be one of the final pieces to understanding my brain. (Note: Anyone can experience a paradoxical effect, not just people with ADD/ADHD.)
My sleep doctor suggested we try Ritalin next. This made me pause. “Should I be talking to my therapist before I start Ritalin?” I wasn’t sure if I should be evaluated by a psychiatrist before starting it, just in case I did have ADHD/ADD.
I decided I should after talking with a fellow Autistic friend diagnosed with ADHD. We talked until 4 AM because things were just finally clicking into place. There were so many “Ah hah!” moments and I began to feel just like I did when I realized I might be Autistic: denial, excitement, dread, grief, anxiety, and finally—utter relief.
So, I brought it up to all 3 of my team: therapist, GP, and sleep doctor. My therapist assessed me and confirmed that I have ADD. My GP agreed to help with dosing for ADD, using the old “killing two birds with one stone” metaphor. My sleep doctor was all for it.
Holding that first dose felt like I was standing on a towering springboard at the edge of the pool. Would I sink to the bottom again? I worked up my courage and took the first dose… and started my new normal.
RITALIN, MY LIFE-RAFT
It turns out that Ritalin works for me. Like, really, really works. Not only does it banish at least 75% of my chronic fatigue while it’s active, it makes me alert and awake, and allows me to function an entire day without crippling sleepiness and an absolute need to nap. I had forgotten what it felt like to be fully awake. For the last decade, it was rare that I could make it through a single day without napping. Now I can do it with relative ease. I’m finding that the day has so many more hours than I remember it having!!
But what happens to my mind is equally as life-changing.
My whole life, I’ve been treading water. I’ve been fighting so many currents, trying to stay afloat. I’ve been fighting to stay afloat, feebly trying to snatch at tasks and getting bowled over by the tide.
Ritalin is my life preserver, my life raft. It keeps me afloat so that I don’t have to struggle to function at a very basic level. When I’m on it, I’m not flailing around aimlessly in the water. I move in a single current with direction and ease.
Jumbled thoughts and impulses used to crowd in all around my mind, each demanding to be attended to all at once. My mind would flit from task to task, leaving half-finished projects in my wake. I struggled to begin, switch, and end tasks. Sometimes, I would get so hyper-focused on a single task that hours would pass me by. I labelled myself undisciplined, lacking self control, distracted, impulsive, and lazy.
Since starting Ritalin, I’ve felt my confidence soar, my anxiety levels plummet, and my outlook on life brighten. I’ve been able to look at myself through an even more accurate lens than with just my ASD diagnosis. I’m not lazy; I’ve been working hard just to function. I’m not undisciplined; my mind is moving too fast to focus on one thing for very long. I’m not unusually lacking in self control; I have ADD.
Now begins my quest to adapt to my new normal. For so long now, my life has been built around my excessive sleepiness and exhaustion. It’s been built around my need to hide my frantic, scatter-brained, hyperactive, 90 mph anxiety-inducing mind and my hyper-focused binges. But now that I have the life raft that is Ritalin to help keep me afloat, I can start focusing on things I haven’t dreamt of in a decade.
(…Yes, pun intended.)
Autistically Alex 