Our monthly Adult ADHD Salon in Palo Alto ran late Wednesday night, as usual.
(Call me an ADHD nerd, but this group is the social highlight of my month. We have fascinating conversations. Yes, one conversation among about 25 people with ADHD. It happens! And, it’s always great to cheer progress reports.)
So, I was a little fuzzy-headed the next morning when I read this story in our local paper: The Quantified Self: Taking quantum leap in self-examination. [article is no longer online]
It caught my attention, because one immense ADHD-related challenge is self-monitoring. This poses a liability when you are trying to figure out, for example:
- How you landed in certain surprising (at least to you) circumstances
- How you come across to others
- What you ate for breakfast
- What time you fell asleep and awakened
- How well you’re following through on a routine you’ve set for yourself
The Quantified Self
Leave it to Silicon Valley’s geeks (including the ones who have ADHD but don’t know it—or don’t want to know it). They’ve come up with an entire self-monitoring movement where, as the story explains:
Individuals measure the minutia of moods, weight, pain, muscle mass, even their innermost thoughts, in an effort to know themselves better and improve their lives.
The general movement is called the Quantified Self. If you want to dig in, this looks like a very helpful site: Quantified Self.
Reportedly, the term dates to 2007 San Francisco. That’s when Wired magazine editors Gary Wolf and Kevin Kelly used quantified self to described “a collaboration of users and tool makers who share an interest in self knowledge through self-tracking.” The current Bay Area Meetup Quantified Self group numbers 4,379.
All this sounds great. We can’t hit targets without first identifying them. Yet, without bringing neurophysiological information to bear, this amassed minutiae might have severe limits. After 20 years of living in Silicon Valley and leading Adult ADHD groups, I’ve learned: Being software-savvy does not translate to being neuroscience-savvy.
Re-Inventing The Wheel?
Bo Adler is a leader in this geek elite “Quantified Self “movement. The story (that’s no longer available) begins by relating how conventional medicine has offered no good treatment for his long-standing sleep problems:
So when young computer scientist goes to bed each night, he conducts his own one-man research study, determined to find secrets to restful slumber….
Interpreting the data from his Sunnyvale apartment, the Cal Tech-educated Adler seeks to identify lifestyle factors — Pepsi? Worry? A girlfriend’s visit? — that might correlate with restlessness.
“Doctors just follow the recipe books. That is not helpful,” he said. “Everybody is different. Maybe there are things that are specific about me.”
Sleep: a Newly Burgeoning Science
Sleep is a complex subject, especially in this Age of Distraction. Moreover, it is only in recent years that we are making important discoveries about why we sleep.
Adler sets an example for us all by pro-actively monitoring and managing his own health. A good physician requires data.
Yet, what if your sleep challenges aren’t specific to you but instead are specific to a large subset of people with ADHD? (I wrote about this topic in this blog post, To Sleep, Perchance to Turn Off That *&$@#” Computer,” which drew many validating comments.)
I agree with Adler that “conventional doctors” aren’t always so helpful in such matters. That’s especially true if they have no clue about the connection between ADHD and sleep challenges—and even some alleged ADHD experts remain clueless.
The typical “sleep hygiene” tips just don’t always work with untreated ADHD. At not without a strategic plan for making it happen.
To make matters worse, the Stanford Sleep Medicine Center’s has maintained seemginly willful denial of ADHD-related sleep challenges. That is, it’s more likely to put the cart before the horse: attributing ADHD symptoms to sleep deprivation.
(Note: Please be sure to read Adler’s comment below for clarification; and you can read his “Suggestions for Sleep Apnea Self-Experiment”)
The question remains: Will sleeping with electrodes affixed to one’s head and analyzing the resulting database provide all the necessary answers? When it comes to possible ADHD, possibly not— if contributing neurogenetic factors, aren’t considered.
What do you think? What’s your experience of ADHD and sleep—in yourself or a loved one?
An earlier version of this post appeared June, 2010
Hello,
From both personal (lifelong) experience & recent research findings, I’m convinced that ADHD is strongly associated with circadian rhythm problem(s), esp. DSPS (Delayed Sleep Phase Syndrome) , which seems to be very common among ADD’ers (myself included). In the 1st of 3 links below, 31 of 40 adult adhd patients had “SOI” (sleep onset insomnia) characteristic of DSPS.
http://www.ncbi.nlm.nih.gov/pubmed/20163790
http://www.ncbi.nlm.nih.gov/pubmed/17948273
http://www.ncbi.nlm.nih.gov/pubmed/19110891
Regards,
James
Thanks for sharing that, James.
You are so right. Circadian rhythm is indeed a factor, as research is increasingly showing. It seems that the poor sense of time that people with ADHD commonly have is related to this. It makes sense when you think about our “internal clock” being dependent on chemical messages to and from the brain, to and from the environment. The messages just aren’t being sent as they should. Sometimes medication helps, and sometimes making an extra effort to give the body cues helps (getting light first thing in morning, dimming household lights at night, etc.)
I just researched this topic for an article in CHADD’s Attention magazine, and I’m working on a short book on the topic. It’s so needed……
Mrs. Pera — Regarding self-monitoring: Are you familiar with Seth Roberts? He has made a career of monitoring himself and performing experiments to see the effect of various foods, sleep and other activities had on his body, moods and so forth. He has written papers and spoken about the idea of self-experimentation, with careful monitoring, to come up with new ideas.
http://sethroberts.net/about/
I don’t know you at all so I hesitate to call you “Gena”, but I have just started “Is It You, Me or Adult ADD”, so I feel that I do know you in an important way. Thanks for the book and thanks for this blog.
Hi Steve, and welcome aboard the roller coaster. Thanks for stopping in. If you’re reading my book, we’re having a pretty intimate “conversation,” so please do call me Gina. 😉
No, I didn’t know about Seth Roberts, but I bet Bo does. Thanks. I’ll check out that link.
Gina
Good points, and that’s part of what got me started with this tracking. I was on a CPAP, but I didn’t feel like it was helping, and I wanted to try to measure the effect. (It turns out that it does help, but I was ripping off the mask after 2 hours, so I couldn’t feel any improvement.)
On food allergies: a friend had me go on an all rice diet for five days, with no improvement. Perhaps I should have done it longer? The only thing I discovered is that when I eat the combination of a burger, fries, and pepsi, my nose starts running for about 30min.
On not finding the unknown: true. That’s where sites like CureTogether come in, because you can look up your symptoms and discover what other people have tried. And thanks for bringing up the neurotransmitter angle; I will try to look into it and see if that could possibly be a factor. Even better would be for you to propose an experiment that people could do at home to try to measure an effect from neurotransmitters!
Hi Bo,
Lots of people with ADHD have CPAP machines ….. lying on the floor by their bed. 😉 They simply won’t use them, or end up tearing them off in the middle of the night due to discomfort.
I don’t direct this information at you, and I’m surely not suggesting that, based on the few details you’ve shared, that you might have ADHD. I’m just talking in general terms.
Research is shedding some light on the link between dopamine and sleep disorders (delayed sleep phase, sleep apnea, restless-legs syndrome, etc.). Here’s one general study: http://www.sciencedaily.com/releases/2006/10/061012190058.htm
excerpt: When dopamine levels were dramatically reduced, the mice could no longer sleep, the scientists said. When dopamine levels were increased, the mice exhibited brain activity associated with dreaming during wakefulness.
The same processes likely occur in humans, according to the researchers. They said the findings give insight into the sleep problems common among patients suffering from Parkinson’s disease, a neurodegenerative disorder in which brain cells containing dopamine die or become impaired.
When we’re sleeping, the brain communicates with the body in monitoring oxygen levels and opening the throat so we can breathe and bring in more oxygen. How do these messages between brain and body get communicated? Through neurotransmitters such as dopamine.
As for your rice diet, well, what if you have a food sensitivity to rice? Food-sensitivity testing is not a finely developed science, but we can often get better starting points. Yes, burger, fries, and Pepsi — unhealthy on so many levels, it’s hard to know where to begin. 😉
I’m a big believer in trading notes with other patients; sometimes great discoveries are made (such as commonly shared side effects to medication). But it’s also important to remember that humans are not, as a rule, highly accurate self-reporters. The issue of bias can also be a problem.
Hi Bo,
Thanks for weighing in. You’re right; newspaper articles must necessarily leave out many details. I’m happy to adjust my post accordingly and point to your comment here. Perhaps you’d like to add a link to your work?
It might be true that we as individuals are most qualified to be the detectives in our own lives, but sometimes we can be led astray by what we’re certain are the facts. 😉
For example, some people (and some sleep specialists) attribute their lack of restful sleep to identified sleep apnea. So, if they’re diligent, they use the CPAP. And that does help some people. But what if sleep apnea isn’t the core challenge? What if neurogenetic issues with the neurotransmitter dopamine is causing not only their sleep apnea but ADHD symptoms? An individual won’t find what he doesn’t know to look for.
Re: your congestion. If you can track occurrences of congestion to ingestion of certain foods, well, that’s very useful. As I said, I do think these tracking systems can be very useful in many circumstances; preliminary research on bi-polar disorder links positive treatment outcome with programs that encourage self-monitoring.
Perhaps you want to check out the blog of Dr. Charles Parker. He’s writing about some cutting-edge issues in gathering “data” related to sleep, brain function, histamine, food sensitivities, and so forth.
http://www.corepsychblog.com/neuroscience/
You’re right — sleep is a very complex subject, and (despite the name) the process for how to conduct an investigation is more a rough guideline than a precise science. Due to the nature of newspapers, much of the details are left out or glossed over. In my particular case, I have had really bad congestion my whole life that allergy medicines don’t help and it’s clearly impacting my sleep. For sure it’s not the only problem I have, but it seems like the most prominent one, and that’s one thing I’m trying to track.
Generalizing, I think that the QS movement arises from the fact that we know ourselves best. Armed with increasingly sophisticated technology, we can take a conversational hypothesis (“my congestion is the primary factor in my sleep problem”) and actually test it in a pseudo-science kind of way. This is really “citizen science” (like amateur astronomy) taken to the next level, trying to develop techniques and tools that anyone could use.
This business of software-based self-monitoring strikes me as yet another exercise in cool software engineering. Even so, I suppose it might help some ADDers discover how out of wack their life is, given the poor level of self-awareness they frequently show. Yes, it is overkill as compared to just keeping a notebook and noting everything down, but hey, that’s way too much to ask of your typical geeky ADDer. So, on balance I guess this kind of data is better than none, though I foresee that whatever conclusions emerge will ultimately be ignored in favor of the latest toy 🙂
Interesting perspective, Masked ADDer. Makes sense to me!
Thanks for stopping in.