My Adult ADHD Experience, Six Months Later

If you’re just joining us, since April of this year I’ve been documenting my ADHD experience in the hopes that it will help anyone who’s struggling with similar issues. I began by talking about my symptoms and what I tried before admitting it might be ADHD and seeking treatment. Then I wrote an update about my mixed results with the first medication I was prescribed, followed by the more promising results from the second medication. That was in June, and it’s October now; so what’s happened over the last four months?

I’ve been continuing to take Adzenys XR-ODT since I was originally prescribed the medication. We’ve increased the dose from 3.1mg (which I’ve since discovered was actually lower than the recommended pediatric starting dose, which makes it all the more surprising that I actually had some good results while taking it) up to 9.4mg (still below the recommended adult starting dose). For comparison, Adzenys XR-ODT 9.4mg is comparable to Adderall XR 15mg (which is not currently available in most of the country). I’ve stuck with the 9.4mg dose for two months now.

The modest improvements in attention, focus, and executive function that I noticed when beginning the medication have become significant, and the effect continues to be consistent over the course of the workday rather than concentrated immediately after I take a dose. I still don’t feel manic, and I still feel like myself. The concerns about blood pressure haven’t gotten worse, despite the dosage increases; and I’ve actually been able to make some improvements in that regard since being medicated since I’ve actually been able to exercise somewhat regularly without it feeling like an impossible task. My wife has noticed externally that the improvements in my home life have continued, as well. My alertness, focus, motivation, executive function, energy levels, mood, temporal perception, memory, and cognition (the factors by which I think about my attention levels) all seem to be greatly improved, though I do think there is room for more improvement.

But probably the biggest thing that proves it’s working comes from when I haven’t taken it. There have been a few days when I’ve forgotten to take it (the early mornings are when my ADHD is the worst, since it’s been the longest since my previous dose), and on those days I notice a distinct regression in my mental capacity; most clearly in my focus and motivation, but affecting all the aspects I’ve been monitoring.

Even that, though, pales in comparison to the change that happened when my wife and I went on a mini-vacation and I forgot to take the medicine with me (early mornings, I’m tellin’ ya). Over the course of three short days, I felt myself regressing significantly; to the point where, on the last day, I could tell that my mental status was probably comparable to what it would’ve been on a bad day before medication. Do you remember Daniel Keyes’ short story Flowers for Algernon? I remember reading it (and frankly being haunted by it) in Mrs. Anderson’s sixth grade class. In the story, a man named Charlie recounts his experiences with an experimental treatment to increase his intellect and mental capacity, a procedure previously performed on a mouse named Algernon. It’s told in first person, and demonstrates his rapid transition over the course of days or weeks from a state of intellectual disability to a super-genius, and the associated increase in his confidence. But at a certain point, the mouse Algernon begins to decline in intelligence, and Charlie realizes that it will happen to him, too; for the remainder of the story, he relates his experience with the knowledge that he will lose his intellect as well, and his fear and dread as it all slips away.

That’s what it felt like to not take the medicine for a few days. I know that sounds dramatic (and, to be fair, it is), but there is a marked difference between medicated and not medicated; and I can tell more acutely when I’m not medicated.

Dramatics aside, as noted above, I do think there’s room for more improvement; I’m planning to ask for another dosage increase the next time I have the medication refilled. I’ve noticed that there’s a steep curve of improvement that tapers off after the first couple of weeks on a higher dose, and this time that curve seemed to last a bit longer before normalizing, so I think we may be close. Winter is coming, though; and I’ve had issues with seasonal affective disorder in the past, so we’ll see if I need to make adjustments for that.

I’ll continue to provide updated here; as always, thank you for your kind words of support, and I hope that people continue to be helped by these posts. Please let me know if there’s anything that you’re concerned or curious about; I’d love to share more, and I appreciate your presence with me on this journey.

My Adult ADHD Experience, Month Two

A month and a half ago, I posted about the beginning of my ADHD treatment journey. A couple weeks later, I posted an update, detailing my mixed results with Strattera (Atomoxetine).

So, a little more than two weeks ago, I talked with my prescriber about my experiences. I essentially told her everything that I put in my previous article: on the whole, it gave me more good days and fewer bad days, but it didn’t really make either of them better. She was very understanding, and was willing to move me onto another medication. I told her about a medication that my pharmacy was able to get (and I knew that because a friend of mine was on it), and she prescribed me an orally-dissolving formulation of Amphetamine, the same medication that is found in Adderall. After a brief delay with insurance (they required a prior authorization, but the drug manufacturer offers a coupon program that makes it $50 per month without insurance, so we opted to skip the insurance claim), they were able to order the medication and I picked it up the next day. The day after that, I was going out of town for the weekend with my family, so after forgetting to take either medication for a day, I took my first dose of Adzenys XR-ODT.

On that first day, we were driving home from our weekend trip, and I immediately noticed that there was a significant difference in my awareness while I was driving. Usually I have to make regular stops, drink lots of caffeine, or have an active conversation in order to not feel drowsy or distracted when driving for long distances; but on that day I just didn’t need any of those coping mechanisms. I experienced no side effects, and I didn’t feel like I wasn’t myself. I also didn’t have the same “warm brain” feeling I did with Strattera.

The next day at work, I was pleased to discover a decent improvement in attention, focus, and executive function; the very things I was missing with the previous medication. I also appreciated that the Extended Release nature of the medication means that boosts seem constant throughout the workday, rather than wearing off over time. The overall effect wasn’t to the level I wanted it to be (and in fact it still isn’t), but I do feel like I’m in the right medication family; now I just need to dial in the dosage, and monitor my blood pressure. Over the past two weeks, I’ve been pleased with the improvements I’ve experienced in those areas, as well as the huge reduction in my time blindness; it’s much more rare for me to be surprised that it’s “already 3:00 in the afternoon.”

Maybe the biggest thing I’ve been surprised about in this ADHD journey is the different facets there are to the seemingly-simple word “attention.” Before beginning this process, I thought it was just one thing; and while they are interconnected, what I thought was just “attention” is actually a combination of alertness, focus, motivation, executive function, energy levels, mood, temporal perception, memory, and cognition (and there may be more, but those are the ones I’ve noticed so far). Some coping skills and treatments have improved some of these facets and not others; and deficiencies in some of them are problems during the workday while others are a problem in my family life. Do note, these are not medical or psychological terms, but here’s briefly what I mean by each:

An Executive Function deficit.

  • Alertness: My ability to remain aware of my surroundings for a long period of time, particularly when they’re “boring” or when I’m focused on something else. This is different from energy levels.
  • Focus: My ability to concentrate on one task, conversation, text, line of code, etc. Most often a problem at work.
  • Motivation: My desire to do things, even things I enjoy doing. Closely tied to executive function, but not exactly the same thing.
  • Executive function: My ability to start or switch tasks, or make decisions. This deficit is usually either called laziness or decision fatigue.
  • Energy levels: My capacity for continuing a task or interpersonal interaction. This is heavily affected by but not completely controlled by sleep.
  • Mood: The thing I have the least problem with. I know a lot of people experience anxiety or depression with their ADHD, but I’ve never really had trouble with that.
  • Temporal Perception: The deficit of this is called “time blindness.” I’m notoriously bad at estimating time (past or future), and before medication I almost always had a moment—usually at around 3pm—where I think “Whoa, it’s [whatever time] already?!”
  • A memory deficit. Well, a deficit of useful memory.

  • Memory: I’ve never had a particularly strong memory. Or, more precisely, I’ve never had a particularly strong ability to recall important information, despite being able to remember irrelevant data almost instantly.
  • Cognition: My ability to process information. I’ve historically not had as much trouble with this mental function as with some of the others.

Since I’m seeing improvement in a lot of these areas, I’m really excited to see how this particular part of my journey progresses. I’m looking forward to seeing if a dosage increase helps me perform at the level I want to be able to perform at.

But of course, I’ll continue to talk about it here. I continue to be staggered by all of the people who have been interested in—or even helped by—my documenting this experience; thank you again for your kind words of support, and I hope that people continue to be helped by these posts. Please let me know if there’s anything that you’re concerned or curious about; I’d love to share more, and I appreciate your presence with me on this journey.