ADDition

Blog about personal experience with ADHD by Robert Dawson

My first significant break from Concerta

Tomorrow will mark my first significant break from Concerta. I need a refill but my doctor, who I might change due to the inconvenience of traveling to her office, is out until Thursday. So I have to call that morning to ask when I can pick it up. Hopefully, that can be Thursday afternoon. Worst case is Friday afternoon, I suppose.

Tomorrow, I expect to feel tired. And I worry that I will feel especially moody. In one sense, the best case is that I don't feel any different. But, then, that would mean that the medication isn't working. So, I have to at least feel less focused. Or maybe I'll crave dopamine and want to skydive.

The one thing I can control, though, is sleep, and I'm sleeping early tonight to feel my natural best tomorrow and be somewhat productive.

My sleep patterns

I've started using the Zeo Sleep Manager, which uses an EEG machine to record and analyze sleep patterns and wake you up at an optimum time. I love it! Before this, I used WakeMate and liked it a lot, too, for the same reasons. It's a little weird waking up with red square spots on my forehead, but I'll tolerate the fading tattoo for the ability to wake up refreshed on as little as 5 hours of sleep.

Speaking of that, in December, I averaged:

Total sleep: 6:41
Deep sleep: 1:24
REM sleep: 2:08
Time awake: 0:03
Times woken: 1

In January:

Total sleep: 6:33
Deep sleep: 1:19
REM sleep: 2:05
Time awake: 0:03
Times woken: 1

Also, the week of 1/8-14, I slept at 11:45 PM on average, while the week of 1/1-7, I slept at 1:05 AM! I think I usually sleep around 11:30 PM these days. Also, the average guy between 30 and 39 years old sleeps at exactly midnight on average. Oh, and I appear to get more deep and less light sleep than average for some reason. Of course, I've been lifting weights lately, so I would expect a lot of sleep time to be allocated towards physical recovery and rebuilding.

Lastly, here is what my sleep looked like last night. Light green is REM, dark is deep, grey is light, and red is awake.

One Busy Break

I haven't posted anything to this blog lately because I've actually been productive for a change and have been flooded with so many ideas that, between work, school, and personal projects, I'm amazed I'm still sleeping at night.

What's happened since my last update on October 27?

  1. Started working on a decade-old idea to convert between music and art
  2. Started a project management class for work
  3. Resumed making iPad art
  4. Resumed making iPhone art, mostly iPhone photo art and iPhoneography
  5. Started making music on the iPad and iPhone!
  6. Started this new website with Squarespace, to improve maintenance and centralize creative activities

I think that qualifies as busy. I know it qualifies as the happiest, most focused, and frustrated about lack of time I've been in a long while. But, overall, it feels good to be productive.

I'm not sure if I can blame Concerta for the ideas. It may be that, and hopefully is part of it or I'm just wasting money, but I think it also coincided with being busy at work and realizing that I could make progress on my conversion idea. Because of my work on this conversion, I've learned and experimented with a ton, and I will be updating that blog soon to reflect that.

The only problem I've found, which I do associate with Concerta, is another way of talking about what my prescribing doctor warned me about, which is that increased focus doesn't imply better decision making. I've found that I can focus for a long time, really in the "zone," but the downside is not having enough time to finish and not making enough time for other things. Fortunately, I haven't shriveled to a stick for lack of eating. I'm actually working out harder than ever right now with the help of a coworker.

The only frustrating thing about being on a medication getting to the end of a prescription. My doctor went on vacation or leave for a whole month in November and I'm almost out of those ingenious little time-released capsules. And I have to call tomorrow to make sure I can pick up a new prescription before I leave for holiday vacation next week. Not fun.

New research on methylphenidate

I ran across a great website for finding and participating in clinical trials. It's http://www.clinicaltrials.gov. Here is a recent one involving methylphenidate:

A Placebo-Controlled, Double-Blind, Parallel-Group, Dose-Titration Study to Evaluate the Efficacy and Safety of CONCERTA in Adults with Attention Deficit Hyperactivity Disorder at Doses of 36 mg, 54 mg, 72 mg, 90 mg, or 108 mg per day

What I learned

  • This study was sponsored by Johnson & Johnson, makers of Concerta.
  • Concerta was found effective at 36-108mg. Can't tell which dose worked best. But I guess that depends on the severity of ADD/ADHD and genes.
  • Most common side effects:
    • decreased appetite (25.5%)
    • headache (25.5%)
    • dry mouth (20.0%)
    • anxiety (16.4%)
    • nausea (12.7%)
    • blood pressure increased (10%)
    • insomnia (9.1%)
    • initial insomnia (7.3%)
    • heart rate increased (7.3%)
    • bruxism (6.4%)
    • irritability (6.4%)
    • muscle tightness (6.4%).
  • "The mean change in weight from baseline to the Final Visit (LOCF) was -2.2 kg in the All CONCERTA group and +0.2 kg in the placebo group." That's -4.85 lbs for the metrically-challenged. I can't tell from the study how long this weight loss took.
And, because I like visuals, here is one quickly showing the side effects:

Quick update

I've decided to stay at 36mg because I felt more nausea on 54mg. This is unfortunate because I felt more productive on 54mg. Although, that could be coincidence. And the difference wasn't drastic.

But even on 36mg, I feel nausea sometimes. I feel slightly nauseous now. I need to figure out what contributes to it or why it happens at all. Google hasn't helped me so far, but I'll look again.

Overall, though, this week at work I was very productive, so I'm glad Concerta seems to be working.

Oh, and I didn't drink as much caffeine this week, which is good for my heart! And no noticeable withdrawal.

Finally, I should note that I slept a fair amount this week, more on average than last week and more consistent.

Trying 54mg of Concerta

This morning, I tried 54mg of Concerta, 18+36mg. I felt slightly nauseous on the way to work and breathing seems slightly labored. And when you hear "breathing" in the context of a side effect of medication, you immediately think "not worth it." But it was not enough to make me feel that bad. It was just enough to annoy me. So, unless today is incredibly productive, I'm going back to 36mg tomorrow. Eating helped some, and I actually ate a little before I took Concerta, but, so far at least, it's not worth it.

And I slept 7.5 hours last night, so I should feel okay. Or, at least, I shouldn't feel nauseous this afternoon, if my theory holds.

I noticed this morning that I haven't been playing my usual iPhone games as much lately. I noticed because I received my second notification that a game would be forfeited if I didn't play. That's never happened. More focus? I guess so, although it could just an adjustment phase.

How Concerta works genetically

If you're interested in genetics and you take medication, you have to check out PharmGKB. I looked up the pharmacogenetics (new word for me, too) of methylphenidate (i.e., Ritalin, Concerta) and found that it is thought to be associated with several genes and to target several others.

Genes associated with methylphenidate

  • ADRA2A - regulates "neurotransmitter release from sympathetic nerves and from adrenergic neurons in the central nervous system"
  • CES1 - "responsible for the hydrolysis or transesterification of various xenobiotics, such as cocaine and heroin, and endogenous substrates with ester, thioester, or amide bonds"
  • COMT - "catalyzes the transfer of a methyl group from S-adenosylmethionine to catecholamines, including the neurotransmitters dopamine, epinephrine, and norepinephrine"
  • DRD4 - "encodes the D4 subtype of the dopamine receptor"
  • SLC6A3 - "encodes a dopamine transporter which is a member of the sodium- and chloride-dependent neurotransmitter transporter family"
  • SNAP25 - "presynaptic plasma membrane protein involved in the regulation of neurotransmitter release"

Genes targeted by methylphenidate

  • SLC6A2 - "responsible for reuptake of norepinephrine into presynaptic nerve terminals and is a regulator of norepinephrine homeostasis"
  • SLC6A3 - "encodes a dopamine transporter which is a member of the sodium- and chloride-dependent neurotransmitter transporter family"
  • SLC6A4 - "encodes an integral membrane protein that transports the neurotransmitter serotonin from synaptic spaces into presynaptic neurons"
As an aside, I'm starting to think that lack of sleep contributes most to afternoon nausea.

Extreme focus with sufficient sleep

Last night, with the help of a sleep aid, I managed to stay unconscious for almost 10 hours. Guess how I felt today. Extremely focused. I felt so focused that I worried I might never stop paying attention.

This reconfirmed the value of sleep while taking Concerta. It makes so much difference. Sleep deprivation basically negates the benefit. Plus, I feel incredibly, inexplicably tired. Side note to self: Find out why Concerta does that.

Today, I read a small library's worth of ADD/ADHD information. And I found an excellent website that gives an excellent overview of symptoms. Check out adultaddfacts.com. I also bought the author's book entitled Adult ADD Factbook - The Truth About Adult Attention Deficit Disorder. I've only read a few pages, but I've already found a part discussing DAT1, the dopamine transport gene, and its possible relationship to ADHD/ADD. Highly recommended.

I also drew today in preparation for a still-life painting. The idea is to include enough detail and take enough notes to rely only on those things and memory while painting. I mention this because I felt very focused as well while drawing for accuracy. Its become harder as I've gotten older to focus on visual details when drawing or painting. I tend to want to draw expressively and improvise. That said, generally speaking, art has always been the one area where I hyperfocus and forget to eat.

My ancestry

I recently joined and submitted DNA to the personal genome service, 23andme. I'll post more about what I've found later. Much of it shows no direct relevance to ADD/ADHD, but some of the findings are significant.

For now, I would like to note that I have become very interested in my DNA. I know my DNA! That's crazy. Most people don't. It's understandably scary. But I haven't honestly learned that much about myself from their results. The most important finding for me has been that I process caffeine slowly, which means that having 2-3 cups a day increases my risk of heart disease. That's immediately useful information.

One part of 23andme is ancestry. So, just for fun, I want to share this. They conclude that I am most genetically similar to Northern Europeans:
Global similarity
Using Google Docs, I also made a chart of it from an admixture proportions tool at gedmatch.com:

And here is a more detailed look from 23andme. I'm the green marker.
Global similarity - detailed

36mg

I slept 5 hours last night. I stayed up to update my iPhone operating system to iOS 5. I love it! But I didn't sleep enough. And I feel horrible, worse than I would have expected given this relatively small amount of sleep deprivation. It feels like I've been awake for days. My body aches for sleep. This is a pattern.

Anyway, this morning, I went to my doctor for my first checkup. It helped that I prepared my observed changes and concerns. She listened, wrote almost everything I said down, and prescribed a one-month supply of 36mg, the dose I'm taking now in two capsules. And she told me that I could try 54mg if I'd like to see the effect. I'm basically experimenting on myself with professional supervision. But that's how it goes short of an MRI or other such direct brain-based observation. So, since I have only 6 18mg capsules left and already have my new prescription, I'll try 54mg one day this weekend.

She says that 36mg and 54mg are the most common doses and that I might see improvement with another increase. My two worries, I told her, are that I will have less appetite, which is now easily manageable, and that I will focus more, which, while being the point of taking the medication, can be a real problem if I focus on the wrong things. Wrong = want. Right = should.

And I asked about discontinuing Concerta on weekends. She said that some people do that, but that I might feel moody and tired. So, I'm not sure about that. My goal is to do more with less and, over time, to do more with nothing, on my own.

Concerta: changes and concerns (updated)

I recently listed changes I've noticed on Concerta and a set of concerns. Here is an update with a new effect and a new concern, both about the same annoyance I've noticed recently, which is nausea.

Effects of Concerta

  • Much better focus
  • Slight loss of appetite
  • Verbosity
  • More sensitivity to sound
  • Less moody
  • Nausea

Concerns about Concerta

  • Are there any potential long-term problems associated with using Concerta?
  • Will I develop a tolerance to Concerta?
  • What might be causing nausea?
  • Can I not take Concerta on weekends?

I've experienced slight nausea in the afternoons. It may be associated with caffeine intake, since I usually drink coffee in the afternoon, but I have also felt nauseous before drinking coffee. Or, maybe it takes a while to feel nauseous after drinking caffeine.

What's odd, though, is that I typically drink a pre-workout mixture that has caffeine and I don't recall feeling nauseous during or after workouts. I guess it's possible that working out prevents nausea. Hmm. Hopefully, I'll find out tomorrow morning when I see my doctor again.

Productive day

Today, I woke up at 10:30am, so I took Concerta late. It hasn't caused a problem, though, if my current sleepiness is any indication.

Today was productive. I wanted to paint but, before diving in, I wanted to explore the changing role of painting throughout history. Amazingly, I did. In fairness, I started it yesterday. But finishing it is an accomplishment. And I managed to write two more blog posts today, not counting this one, one of which is nearly as long as the first.

So, today, I figured out painting's changing role throughout history and figured out my next painting based on a realization about painting's current validity as a creative medium. Not bad! I didn't paint, but at least I know that what I will paint tomorrow is grounded in a confident decision about what to paint.

Concerta and alcohol

Today was the first time I've had more than a glass of wine while on Concerta. And that was at night. This was during the day, while Concerta was still working.

Caveat: I can't speak for everyone. The experience must differ somewhat across individuals given their makeup and a variety of other possible contributing and commingling factors. But this is how I felt.

I felt amazing!!! No, I very much did not. Today, while searching for information about the combination of Concerta and alcohol, I ran across several forum posts praising it for its ability to do two things, counteract the downside of alcohol, effects like drowsiness and dizziness, and create euphoria. As an aside, I also learned that methylphenidate (aka Ritalin and Concerta), and ethanol (aka alcohol) combine to produce a similar psychostimulant to methylphenidate called ethylphenidate. I worried about that, but it doesn't seem a big deal, especially given how little I drank.

So, what did I feel? Not much of anything. I briefly felt drowsy and noticed a slight delay in reaction time. But that's about it. After a glass of sangria, maybe 1/4 of a glass of beer, and most of a shot of whiskey (sipped over the course of a couple of hours, mostly because I will never enjoy the taste of alcohol), still no buzz.

But I wasn't disappointed. Based on what little I had read about the combination before today, I expected not to feel that "out of it" sensation of intoxication. I expected to feel lucid. But I didn't expect to feel not the slightest bit intoxicated. That's a first. I can see why people might easily drink too much if they're not paying attention.

And, for this reason, anyone taking Ritalin or Concerta who isn't familiar with how much he or she can safely drink, like teenagers going to their first parties, should really watch it or, preferably, not drink at all. I'm not saying that to be parent-y. I'm saying it for the same reason that you wouldn't punch a brick wall if you couldn't feel pain. You're still hurting yourself.

For me, though, it was just a waste of money. I didn't even feel less inhibited. Lucid and less inhibited would be a cool combo. But nope.

Here is a good summary of the effects of this combination. From what I've read, and this makes the most sense, if you do know your limits and you are going to drink, do it at night, after your medication has worn off. You won't sleep well, but at least you'll know your limit. Otherwise, get ready for a horrendous hangover.

Concerta: changes and concerns

Here is a summary of the changes I have noticed from using Concerta, followed by a set of concerns that I have about using it, all of which I will mention to my doctor.

Effects of Concerta

  • Much better focus
  • Slight loss of appetite
  • Verbosity
  • More sensitivity to sound

Concerns about Concerta

  • Are there any potential long-term problems associated with using Concerta?
  • Will I develop a tolerance to Concerta?
Since I have, you know, the Internet, I decided to search for answers to my concerns above. Regarding long-term problems or side effects, all I can find is a problem with growth in kids. Other than that, it seems that no one has studied the effects of taking Concerta for more than 7 weeks, which is odd given how long Ritalin has been around. Concerta was approved for adults in 2008. Thanks, Johnson & Johnson!

Blah Friday

I slept 6.5 hours last night, but I feel exhausted. I'm not sure why.

I haven't eaten much and I'm not hungry, but my stomach seems to be telling me to eat, so I need to decide what to eat. I think I need carbs.

As for productivity today, I've been a little productive, but I need to pick up the pace this afternoon. Specifically, I need to make a list of next actions and self-imposed due dates. Otherwise, I have no direction and won't make much progress.

I wonder if Concerta is taking a toll on my body. How do human bodies typically react to the introduction of amphetamines? Although, this can probably simply be explained by basic lack of sleep. But, it feels like I'm tired, yet Concerta is keeping me going. Feels a bit strange. Could just be low energy.

Oh, and I see my ADD/ADHD doctor next Thursday, so I need to make a list beforehand of post-Concerta changes and concerns.

Verbosity on Concerta

Aside from loss of appetite, I've noticed another interesting side effect of taking Concerta, verbosity! If you want to be a writer, take amphetamines. Seriously, I could write a book.

I'm not so sure that I could sit and read for longer than usual, which, incidentally, would be about 20 minutes on a good non-Concerta day. But, man, can I quickly compose long sentences, nearly every word of which I contend to be at least amusingly informative! TMI? Not on Concerta!

But I'm not upping my dose, I promise. It lessens impulsivity, remember?

Mood shifts

My mood chart

This is a chart of my daily mood average since May 15, so roughly 5 months. I track my mood with an iPhone app called MoodKit. I recommend it if, like me and many with ADD/ADHD, you find yourself struggling to control your moods.

This app has other tools as well to help manage how you feel. But the one thing it doesn't have is a way to track multiple moods per day. It could allow for that and still show a daily average. As you can see, I averaged an upbeat day this last month.

But that doesn't tell the story. My problem is that I have quick mood shifts lasting usually no more than a few hours. So, the first half of my day might be 9/10, while the second might drop to 5/10. But the average is 7, as if I had a fairly good day, which clearly isn't true.

Anyway, given the apparent prevalence of the problem, it makes sense that anyone with ADD/ADHD should track moods and I've found this an easy way to do it. If you don't have an iPhone, there are other options, like websites, forums, and, if you don't care about trees, pen and paper, that might serve you just as well.

Concerta x 2 – Day 3

I slept very well last night, just not long enough at only 6 hours. The worst part of staying up late is not knowing why. I bet a lot of people with ADD/ADHD say this. What do I recall? Well, I know I read about Steve Jobs and pre-ordered his upcoming biography. And I'm pretty sure that I read some posts in Google+. But that can't take hours, can it? Unless time is more relative than we thought, yes, it can! I slept around 12:30am.

But I feel good now. Maybe the medicine is kicking in. Because I slept so well last night, Concerta wasn't likely to blame for poor sleep the night before. I'm not sure what to blame.

And yesterday went well. I had no stomach ache in the afternoon like I did on the first day of a double dose. And, as I said, I slept well, which was the other potential problem. As for focus yesterday, while I can't prove that yesterday was an improvement over the average, it felt like it was slightly more productive.

Oh, and, because I felt so tired and irritable this morning on my way to work (irritable because of rushing, not that it's rare), I took piracetam and Alpha GPC again. I want to test the interaction and I feel confident, despite my lack of degree and debt from that degree, that it's safe to try. If it wasn't, I would have felt horrible the first time as Concerta works immediately.

Concerta x 2 - Day 2

I didn't sleep well last night, although I slept about 7 hours, which is usually enough to feel fine. So, I'm guessing that the double dose is to blame. But, to be sure, I have to take another dose again to compare. So, I took 36mg again today. If I have another stomach ache this afternoon and I don't sleep well again tonight, then I'll revert to 18mg until I see my doctor.

I should note, however, that I felt alert as late as 11pm last night and, before bed, played what I hadn't finished earlier in the day of a MindSparke session, doing very well compared to how I've done recently. So, if I can sleep but I also stay alert, even after the medication has supposedly worn off, then I'm happy! That is, assuming that I'm not burning the candle of my life at both ends.

I should also note that I worked out last night for about 20 minutes, doing mostly weights. So, however unlikely given the short length of time, it is possible, that this contributed to poor sleep.

This morning, I took Concerta with food and I can't tell any difference so far. I feel good, although a little less vivacious than yesterday morning, a difference that I, again, attribute to poor sleep.

Concerta x 2 - Day 1

Today, I took two 18mg capsules of Concerta. Surprisingly, I feel calmer than yesterday. I got close to 8 hours of sleep last night, so I expected to feel wired or jittery. But, no. I feel calm. And focused. Good. But, it is a bit scary to take double the first dose and see a better result. But, if, at the end of the day, my day has been productive, then this is the dose for me. At least until I talk to my doctor.

Update at 4:12pm
At around 1:45pm this afternoon, my stomach started feeling a bit uneasy. I wanted to describe it as jittery before I started this update, but it's really a slight stomach ache. I'm guessing that Concerta is the culprit and that I didn't feel this way this morning because my body was fresh and energetic. When energy slumps, maybe the stomach can't deal with the drug as well? I'm clearly not sure, so I plan to try again tomorrow. I really enjoyed feeling calm and I have felt more focused than usual today, even more focused than any day since Friday when I started taking one 18mg capsule.

Update at 4:45pm
It can't be this simple, and I should write a separate post to focus on the matter, but it seems from reading articles like this that ADD/ADHD boils down to low dopamine. And dopamine is what medications like Concerta increase.