When ADHD meds stop, symptoms return. This is not hard to understand. But here’s the tricky part: You might not notice symptoms return when you stop taking ADHD medication.
The very idea is unsettling — for people with ADHD and their loved ones. But it’s more common than most people realize. And, it’s critically important to understand. This guest essay illustrates.
A friend named Katy wrote to me last week, marveling at the difference in a co-worker’s job performance on and off medication. Trouble is, the co-worker didn’t seem to notice mounting problems, even as she teetered on the brink of unemployment.
By contrast, the evidence was stark to Katy, who has late-diagnosis ADHD and several family members with ADHD. She shares her observations below. After, I share a few thoughts on the larger topic: ADHD and the ability to self-observe.
Now, to the story that prompted this post, from Katy, who has for years managed a busy legal office.
Katy Discovers Evidence of Unraveling
Last week, I found myself sifting through three years’ worth of notes, left by a recently fired co-worker at my office. What I found was both fascinating and disturbing.
This person lost a good job—one that she said she liked—due to mistakes that rose to a potentially very serious level. These mistakes could have caused significant problems for both the office and the client if other employees (including myself) had not caught and corrected the errors.
This person has an ADHD diagnosis. So do I. We work in the legal field. You simply can’t make mistakes in law. Obviously, human beings make mistakes. But you have to be as perfect as it is possible to be, even when you work as a support person in the office. You are paid to manage details — lots and lots of details. It’s detail management to a degree that I never would have imagined existed, prior to my first job in a law office.
Details Details Details
It’s easy to assume that a law office would be a bad place for a someone with ADHD to work. I mean, we simply can’t handle details, right?
For me, this issue all comes back to level of interest: We ADHDers are always at our best when we are engaged. And we aren’t all the same person—we all have different interests. Me, I find law really interesting, I find the work surrounding it interesting, the stories behind the work interesting, and, yes, I think that the drama of it all keeps me engaged.
I’ve found ways to succeed in this environment:
- Using checklists, I check, double-check, and triple-check things all week long, just to make sure I haven’t missed something.
- Systematically poke through my files, scanning the names in the filing cabinet just to be sure everything is in order.
- Clear my desk at the end of the day, every single day, to make sure that there is nothing sitting there that lacks a plan or a purpose.
- Take meticulous notes. This is for the benefit of others who may work on the file. But it also acts for me as “breadcrumbs” to orient myself to the current moment when I come back to the file. I leave absolutely nothing to memory.
But enough about that.
At the time, this co-worker’s previously discovered series of mistakes were in the process of being addressed at various levels. The current situation culminated, however, when this coworker went on vacation for a couple of days.
“Everything is Fine”—But It Wasn’t
While she was gone, a phone call came in that alerted the rest of us to an item that needed immediate attention. The coworker had told us that “everything was fine” in the files that she was managing. We didn’t need to check on anything, she said. She would take care of anything relevant when she returned. That couldn’t have been further from the truth.
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As it happens, I needed to find another item relevant to another one of her cases. It did indeed require attention before her return. While looking, I happened to stumble upon something else that was basically on fire. It would have blown up if I hadn’t seen it. Consequently, I had no ethical choice but to alert the boss. The situation had to be addressed. The other office staff and I did what needed to be done. The person was fired.
But wait, there is another layer to this story. I had actually trained this person to replace me, a handful of years ago, when I left to pursue another opportunity. She was new to the profession. By the time I left, though, she was enthusiastically learning the work and had a good grasp of the basics. I felt that she would grow in the position and that she was capable of succeeding. I’d created checklists and samples for her to reference in my absence. That way, she would have a road map when a new situation arose.
Now She’s “Stuck”—Looking for New Job
Late last year, my co-worker and I had the opportunity to reconnect. I had returned to working in the office during a break in my regular work schedule. The boss had brought me in to organize the office and address the backlog of administrative work.
I found my co-worker seeming stuck and ready for something new. She’d already expressed to the boss her interest in leaving. In fact, he gave his blessing for her to seek another position elsewhere. It seemed a good decision for all concerned, because the level of her work was not where it needed to be.
She lamented that she was nervous about working elsewhere. Her job search was slow and sporadic. It was hard to tell: Was the issue was one poor confidence, lack of ability, or lack of motivation—or maybe all three?
But at one point she did say to me, “I haven’t taken my ADHD meds in like a year and a half. Maybe I should start taking them again.”
This Paralegal Turns Archaeologist
After her firing, I discovered just how far everything had slipped from when we’d last worked together, and in a sort of eerie way.
Paralegal turned archaeologist, I cleaned out her office—solving puzzles, connecting dots, and, yes, going through all of her notes. You can’t really ever throw anything away in a law office. You might need it later (great environment for the OCD-inclined!). I needed to review these several years’ worth of notes that she’d left behind, determine what was there, what should be kept, and what could be tossed.
It was just like digging through layers of dirt—you know, except for the actual dirt part. Her notes, in particular, had been shoved in a drawer, stuffed in chronologically with the most recent on top.
Partially consumed legal pads, used pages still flipped backward over the top. Names and partial names. Phrases and words. No indication of action taken on anything written.
Cross-referencing any of it to the files was pointless; little data in her notes anchored them to the files. These legal-pad notes were mostly useless. No dates. No times. Pages and pages and pages of nothing.
Clear Pattern: Gradual Return to ADHD Symptoms
I continued leafing through them all, moving backward in time. Then I noticed something that maybe shouldn’t have been such a surprise. At about 18 months from the top of the pile, the notes became slightly more detailed. Slightly more useful. More dates. More times. More information. This is right around when she was still taking stimulant medication.
A few months farther back in the pile, at about the 26-month mark, it seemed a completely different person had written the notes. No joke. At that layer, notes became informational, conversational. Rhey included action items, conscientiously noted dates, times, and phone numbers.
By 36 months back, not only were the notes excellent but they also included stacks of used checklists. I had created these checklists, to help her structure her day once I was gone. She had used them for quite a while, checking things off, adding things in the margins, in addition to the pages and pages of handwritten notes.
By the time I dug to the bottom of the pile, I realize I’d watched someone’s mind fall apart in reverse.
ADHD Meds Stop; Habits Fall Apart
I remembered something else that she’d said at one point after I’d returned to the office: “You know, it’s interesting, right after I stopped taking my meds, I still had some really good habits, like the meds had helped me learn new habits and they stuck around for a little while.”
I couldn’t help but wonder if this had initially given her the impression that she could function adequately without medication. And then, lulled into a false feeling of security and lacking the motivation to follow up, she just never started taking her meds again. Habits fell apart. The job slipped beyond her ability to cope.
By the time I reappeared a handful of years later, she was making mistakes that were very apparent. I filled gaps when I could. Ultimately, she had to be allowed to fail on her own terms. I’d actually encouraged her to start taking meds again. The motivation to follow through, however, just wasn’t there.
Gina Adds: Adults Can Fend for Themselves?
I’ll close this post with a few observations, honed over 20 years of directly helping thousands of adults with ADHD and their loved ones navigate ADHD treatment.
Here is a huge and pervasive problem: leaving adults with ADHD to go it alone in selecting, titrating, and monitoring medication. Repercussions tend to be particularly relevant to Adderall. Loved ones might see negative personality changes. But the adult with ADHD sees only “Focus! At Last!” — and refuses to let anyone interfere. I wrote about this phenomenon in my most popular post: The Tragic Truth of Prescription Adderall — Or Madderall
Prescribers Often Disregard Clinical Evidence
Far too often, despite clinical evidence to the contrary, adults with ADHD and their prescribers leave loved ones out of the loop. That’s right, the people most likely to:
- Notice behavior changes large and small
- Care about the adult with ADHD
- Be left guessing when medication is in effect and when it’s discontinued entirely, perhaps walking on eggshells the entire time
- Be most negatively affected by a loved one’s poorly managed ADHD
Unbelievably, some who claim ADHD expertise admonish the partners or other loved ones against mentioning anything about medication. For example, they dare not ask “Are you taking medication?” or “Have you run out of medication?”
Here’s the reasonable-sounding presumption: Adults can look after themselves. Absolutely, the medication situation requires humility and respect. But this assumption — that adults can always guide their own medication process — can horribly sabotage progress. This risk skyrockets when prescribers fail to follow a methodical protocol in selecting and titrating medications. (In my experience, this is most of the time.)
Partners in Life, Partners in ADHD Management
We can avert these pitfalls when prescribers involve both partners in learning about medications and tracking treatment targets over time. This is not infantilizing the ADHD Partner. This simply acknowledges a core fact: Partners in life do best when they are also partners in ADHD-friendly cooperative strategies. It’s called teamwork.
For solo adults with ADHD seeking support as they optimize medication, they can recruit a family member or good friend to help provide objective feedback. When a prescriber doesn’t know how to do this—or is reluctant—I recommend doing it yourself.
I walk individuals and couples through it in my training on medication and sleep: Solving Your Adult ADHD Puzzle: Physical Strategies
How about you? What do you notice when your medication wears off—or when you run out for days or weeks?
Have you ever stopped medication for a while and noticed similar changes?
I welcome your opinions and comments.
22 thoughts on “ADHD Meds Stop, A Mind Falls Apart — In Reverse”
Thanks for this commentary…my situation is a little different. I’m 79 and was diagnosed at 68. I went on Concerta for a number of years, but developed a very short fuse and was quick to get angry at just about everything. My psychiatrist had me reduce the dosage, but I also was diagnosed with kidney disease went on to develop gout. So I stopped medicating and I’m not sure what to do now. I’m thinking about trying Vyvanse but haven’t discussed with my psychiatrist yet. I’m retired and have most of my life is on autopilot so the only thing I need help with is organizing and prioritizing the day-to-day. I’m not sure it’s worth further medicating. Anyway, I’m glad you published this woman’s thoughts because it has given me impetus to look further into my own situation. So far without medicating I have just been marking time on life’s treadmill…not my ideal lifestyle. Thanks again.
Hi Gene,
You say you were “on Concerta for a number of years but developed a very short fuse.”
My questions, if you are interested, would be:
1. Were you also consuming caffeine or nicotine in any form?
2. Were you getting regular sleep?
3. Did you have a balanced diet, with healthy proteins, complex carbs, etc.?
4. Is it possible you had a co-existing anxiety disorder? That is, not ADHD-related “cognitive anxiety” (scattered, disorganized thoughts; worries about what you might be forgetting, etc.) but a true Anxiety Disorder. That tends to respond better to serotonin-targeting Rx. And a stimulant can exacerbate this.
5. Were you taking any other medications?
From what I read, the amphetamines can cause kidney damage, so I imagine you wouldn’t want to risk Vyvanse. But you could ask your MD about that.
It also appears that kidney damage can affect how certain medications are metabolized.
This is all way above my pay grade, but they might be questions to ask a specialist.
Of course, it’s often difficult enough for 65+ folks with ADHD to get a stimulant prescribed.
Did you ever try Strattera/Atomoxetine? It might not work as well as Concerta did, but it might be worth a try. It’s typically best to start at a LOW dose and increase only slowly. e.g. 25-40mg or less to start and maybe remain at that dose.
Kidney disease, however, can alter the metabolism, so it might be that even lower is better.
It might be that genetic testing for ADHD Rx would be helpful — only insofar as identifying certain genes affecting drug metabolism.
Wish I could help more. But maybe that’s food for thought.
Best
Gina
For their patients new to Strattera/Atomoxetine, physicians might run liver panels.
I’m also wondering if you took any other medications in the past that might have adversely affected the CyP2D6 pathway.
Hi Gina,
Thanks for this article on stopping ADHD medication.
I too have taken myself off the medication for the past year and am continually struggling to keep up at work, (not that I ever let on to my Manager or co workers).
The Concerta meds gave me too much of a letdown feeling after the 4 hours or so and I actually could not feel that the Vyvanse even worked and found that I lost interest in intimacy while on the Vyvanse.
I actually feel lost and should go back to my Psychiatrist, but I really don’t know if any meds will be the right ones.
Thanks for your insight again.
Maria’
Hi Maria,
You’re most welcome. I appreciate your situation. It’s all unnecessarily difficult — even before the medication shortages.
You say that Concerta gave you a letdown feeling after 4 hours. That’s fairly unusual. I’m wondering if you had one of the inferior generics.
https://adhdrollercoaster.org/adhd-medications/authorized-generic-concerta-update/
It would be important to know. If you don’t still have the bottle, the pharmacy should be able to tell you.
The thing is….waiting to “feel” if the medications are working can be a poor strategy. It’s what most people seem to do…. :-). But it’s still not useful for many people.
It’s best to have treatment TARGETS. Ones that are likely to respond to medication….and not require new skill development around using a calendar, to-do lists, goal-setting strategies, etc..
I created a course specifically on “physical” aspects of ADHD — medication, sleep, nutrition, exercise…and common health conditions associated with poorly managed ADHD.
https://ginapera.adhdsuccesstraining.com/course-2-physical-strategies
I created it because we are being FAILED on a massive level by poor expertise in the mental-health field.
There are specific step-by-step strategies to understand how the Rx works and how to find one that works best for you. There are so many choices now, and that’s a good thing. It means more people can find something that works well for them, specifically.
I encourage you to check it out. It could make such a difference in your life. For decades to come.
best
Gina
Hello Gina, I have occasionally checked in with your website ever since I was diagnosed as an adult in my 50s when I decided to go to law school, and really appreciate your helpful research and insights! Regarding the article about the law office, I feel like I could have written it about myself. I faithfully took my medication and continued working as a Paralegal, while I finished law school and began the process of taking the bar exam. Unfortunately, I relocated to Texas and did not get another physician for about 18 months, so of course I had no meds. During that time, I was let go from three paralegal jobs in a row, being told that my performance was as if I had no legal training at all. I admit, indeed, that, I absolutely felt confused, apprehensive, and extremely frustrated during that time—like I was in a fog. I have only just now seeing a doctor here and started back on some meds, so I’m desperately hoping that I will be able to level out and function again! Thanks for the essay!!
-Althea
Hi Althea,
Thanks for reading. I’m happy that the story had meaning for you.
It should not be that hard to get the Rx you legitimately need.
take care
g
I read this story 3 times Gina. Its time-lines don’t hang together and thus the story can’t be accurate.
If the ADHD subject that was fired had a declining work performance from 26 months to 18 months as measured by your friend’s analysis of the legal pads stacked consecutively in time in a drawer, and that ADHD person had quit the meds not more than 18 months prior to be sacked, then the
deteriorating work performance STARTED 8 months before quitting her meds. That makes your story pointless. What were you really attempting to say?
Mick – I have had ADHD since birth and still struggle with it. If I live to be a centenarian, two thirds of my time has elapsed.
Hi Mick,
Looks like you have some time on your hands! haha.
Sorry but I don’t have time to go in and scrutinize, to see what you mean. But I trust the writer’s account implicitly.
What might not be clear to you is that when one stops taking medication, it’s often not “cold turkey.”
It might be that they start spacing out the medication, taking it only a day when they think they “need it”—or the day after the day they have really screwed up.
Also: It’s true the stimulants don’t work when you stop taking them. Sort of like eyeglasses; they don’t work when you’re not wearing them.
But unlike eyeglasses, medication can have a residual effect.
That is, medication can help you understand what you’ve been missing; it shifts your perspective. So, even after stopping medication, full symptoms might return. But there is the knowledge, for many, that “I used to do better on medication.”
So, the downward slide might take a while after medication actually ends.
I hope that provides food for thought.
g
I’m 13 and very aware of myself. I do make more spelling mistakes now that I’m off my meds. I’ve been on my meds since I would say 5 or maybe 6 but sometimes I struggle to remember things but during a test my conscious mind helps me a lot. I’ve never got an F yet and I’m surprised and very happy with myself and I do meditate so maybe this helps but I’m sure there is more things I don’t know about myself that I’m missing. My parents think I’m fine and it took me awhile to adapt to my mind because so much was going through it at the time when I was going off my meds.
Hi Anthony,
Thanks for your thoughtful comment.
You know, every brain is different, ADHD or not. And we all have to figure out the “operating instructions” for our brains.
Good for you, for being so self-aware at a young age.
In the next few weeks, I hope to post some information I suspect might interest you. The experiences of children and young teens with ADHD, in their own words.
Because most everybody likes to talk about these kids and ADHD, but we seldom ask or listen to them share their perspectives.
best,
g
Wow, how the @#$% did I miss this site! OF all my research and my quest for learning now that I FINALLY know why I’m so weird and have an explanation for my laziness and memory problems –
I realize I’m a bit late to this particular party (don’t care for parties anyway) but this article really hit me – me, personally, I’d be more than right at home in a law office. In fact all of my personality studies and tests claim I’m ripe for the fields related to law and/or justice. At work the only thing I’m really praised for is my incredible attention to detail. Oddly enough I can miss the tornado siren, but when it comes to finding things everyone else misses I’m among the very best. I tested out recently as “superior” in – problem solving, puzzles, math and other areas. (I had trouble with math as I didn’t do my homework because I was too lazy and simply didn’t apply myself – and wasn’t able to show my work on tests. ) But at work in a very technical IT area, I have found and FIXED problems that were unfound and unfixed for years. Even after experts came in with their traffic sniffers and all of their diagnostics and tests they found no reason for the strange things going on with our email and our network. I got really curious after realizing some of the log entries and other odd things I’ve seen in the past just seem to somehow relate in unexplainable ways – and I start digging. Indeed I found that I recognized some of the log entries from times I was looking into other things and in my head these patterns took shape that I found impossible to explain to anyone else at all. In the end I found that our problems as related to that one issue was not one problem but a pile of multiple causes. I whacked away at them one at a time, with intense detail and finally solved the whole messy pile – and the email and other things suddenly started working just fine. I’ve done similar for other network issues and often find I’m the only one who is able to properly troubleshoot issues, and has the ability to get into the Nth degree of detail. In a legal office I’d be the one to find that little-known case from history that could be the answer. And my intense NEED for justice means I don’t give up easily. I have an uncontrollable, literally, need for justice and even-handed treatment. If there’s a rule and I’m chastised for not following it – there will quickly be a list of everyone else who should hear the same.
I am extremely detail oriented, VERY, and also very technical. I’m a good troubleshooter and find I can resolve problems with areas I’ve never dealt with before. My high school shop teachers said I was a natural, skills that just can’t be taught. And – I’m multiple times diagnosed as severe ADHD later in life. VERY VERY VERY ADHD. Just ask anyone who knows of me. So far – no drugs help. So again this post drew my attention as frankly, I see no difference and even when Adderall XR generic helped for a year or so – then stopped, I found that it wasn’t as much the ADHD it had helped with, but it helped my sleepiness as well. Since then, since the adderall generic was changed and quit, I’ve found nothing at all that helps even a tiny bit. It’s as if the meds go right through me – and don’t even pause to say hello.
Just sign me DESPERATE IN IOWA!
Hi Bill,
Wow.
Have you tried another stimulant, such as Vyvanse? (Sorry, I just saw your other comment and will read that for the details.)
Have you tried taking an amino acid that provides the “building blocks” required for the stimulant to work? (e.g. for dopamine, it would be L-Tyrosine).
There are many other questions — are you getting enough sleep, are you eating well, etc. I hope you can find a good doc to help you sort this out. Or try sorting it out on your own — you are a great problem-solver!
take care,
Gina
This is the best article I’ve read that demonstrates the necessity of medication for those of us with ADHD– especially for the people in jobs like yours, which is seriously detail-oriented.
I came across this article http://higherperspective.com/2014/04/adhd-real-disease-says-leading-neuroscientist.html that claims ADHD isn’t real and it really bugs me that there are neuroscientists out there who are working so hard to prove that ADHD is a “fake” disorder.
Especially when so many of us went years w/o a diagnosis and thus w/o medicine. I think it’s very impacting to go 20+ years w/o knowing you have ADHD, get diagnosed, and start taking medication–because you really see exactly how real the disorder is.
Anyway, I’m hoping you’ll have something to say in response to the article I linked 😛
Hi Kelly,
Ha! Here’s the comment I left on that site (one of those anonymous mills that picks up salacious stories in order to get ad revenue):
Perry is a “leading neuroscientist” in his own mind — and his press releases.
How interesting that this site makes money by promoting “natural” remedies (unproven, containing who knows what, and very expensive) while jumping on the Big Pharma bandwagon. Talk about self-serving.
These sites are truly shameless. If you saw the egregious piece in Esquire a few weeks ago (Drugging the American Boy), you’ll appreciate why I felt compelled to say “yes” when the editor of the New York Observer asked me to write a rebuttal. Here it is:
http://observer.com/2014/04/how-esquire-got-adhd-wrong/
When I worked in an administrative role, I was notorious for my checklists. I didn’t do anything without getting out the appropriate checklist. Everyone thought I was the most organized person ever to oversee HR for our organization, and perhaps that was true. I pulled out every single employee file and created a checklist cover sheet to ensure all the important documents were in there. Every file contained the same documents in the same order front to back. I filled out a checklist every time I processed a new hire or enrolled someone in our health care plan, then filed it for some time so I could answer (even just yes or no) when someone asked if I had added them to the payroll system.
What people never understood was I didn’t do this because I’m naturally organized and thorough. I did it because I couldn’t trust my own mind with anything. A classic ADHD oversight could have meant someone didn’t get their paycheck or a family didn’t have health coverage.
I established many of these systems while on stimulant medication. I have not been able to take it for nearly two years now, and I have a seemingly irrational fear of losing my grip on my organizational systems. I cling to the GTD method and become extremely anxious when I get behind because I’m afraid that will be the beginning of the end.
I may not be able to take medication for quite some time to come, so this post was a reminder that those fears are not really so irrational after all =/
Hi Jaclyn,
Very smart to rely on those checklists!
I think they are a great idea for everyone, ADHD or not. Anyone can get distracted and leave out a critical detail — or just get so used to the routine they forget the importance.
Atul Gawande, M.D., who writes sometimes for the New Yorker, made a strong case for surgical teams using such checklists. It’s amazing to me that they weren’t already! Physicians and surgeons have much to learn from engineers and flight crews!
http://atulgawande.com/book/the-checklist-manifesto/
best,
g
This is a very interesting article. I too have ADHD, and worked in the legal field years ago, before I was diagnosed. I have been a stay-at-home mother for nearly 17 years, and have been looking for a job the last few years. I worry that if I got a job that involves lots of detail work, I’d be at a disadvantage. I’m on medication, and recognize that the meds give me a sense of focus and energy I don’t have without them. I always see job postings that ask for good organizational skills and ability to work independently and worry I wouldn’t be able to measure up to an employer’s needs. I have learned ways to keep track of my tasks and paperwork at home, but still need to tighten that up. It gets discouraging. I think the points in this blog post from your experience could help me be better prepared for working a job. Thanks for your insights and details.
Hi Karen,
I’m glad you enjoyed the piece and found it useful. My friend who wrote the piece has worked very hard to develop and sustain strategies to keep herself organized and on top of these details. As you read in the story, checklists figure prominently.
I especially liked her point that people with ADHD shouldn’t rule out certain careers because they don’t seem “ADHD-friendly.” There is no one right or wrong career for a person with ADHD, as with everyone else. But some jobs will call for more mindful strategies.
Good luck!
g
I do hope your friend continues to try to keep in touch with this person. As any help to turn back to what is good for her is needed. It is horrific to be terminated and probably with a poor reference.
Hi Glencoe,
My friend tried her best to help this person. But sometimes, untreated ADHD means that the person doesn’t listen or know what’s best. They simply are following the stimulation. She seemed to think that a new job was the answer. And maybe it was. Maybe she was never cut out for work in a law office. But, by stopping medication, she certainly cut many jobs out of the realm of possibility.
g
For someone who has been off adderall for 14 months now, this was very difficult to read.
Yes, Justin. It’s scary to know what you might be missing — but don’t see it in your own life.