It’s a miracle that Adina didn’t cause a cycling accident that day. ‘It was like I had smoked three joints, like an amplified high.’ 

But she had an exam to get to and so the life science & technology student got on her bike to go to the Aletta Jacobs hall. Once there, she felt like a zombie. ‘Even my friends thought that my settings were set to slow motion.’

Was she on drugs? No, she’d taken her new ADHD medication.  ‘I switched from a stimulant to medication that slows the brain down’, she says. ‘The side effects hit me like a truck that day.’

On other days, however, the medication did nothing for her. Not for her ADHD, at least. Adina did have weird dreams, low appetite and heart palpitations, while she still had trouble focusing. ‘There was no benefit in taking it, so I stopped.’

Two thirds quit

Like Adina, many adolescents stop taking their ADHD medication. Two thirds of adolescents quit within five years of starting. That’s more often than children and adults with the same diagnosis, according to a European multi-country study, which UG epidemiologist Catharina Hartman participated in. 

When I was on medication, my anxiety was through the roof

There’s also a substantial group that starts taking the medication again within those five years. This is important data, says Hartman, since it allows clinicians to better tailor treatment in accordance with patients’ age.

‘ADHD medication is one of the best-working drugs in psychiatry, yet people still stop taking it’, Hartman says. Together with an interdisciplinary team including colleague Harold Snieder and her post-doctoral student Tian Xie, they looked into the situation in the Netherlands. Several partners in other countries were doing the same research at the same time. ‘We really wanted to do it right this time.’

Preventative effect

In the medical world, quitting is seen as a problem. After all, medication helps with the core symptoms of ADHD (attention deficit hyperactivity disorder) such as attention problems and agitation, but it can also have a preventative effect on so-called co-morbidities: conditions such as depression that often occur alongside ADHD. 

‘In addition, ADHD can hamper some people so much that they end up in a cascade of debt or addiction’, Hartman says. People with ADHD tend to be more impulsive and have a higher risk of addiction. 

The medication can help them make more informed decisions, or even prevent an early death from road accidents or suicide.

Thanks to the study, clinicians now know that there is a group that stops quite quickly after starting medication and that this is more common in young adults. ‘This group might need more than just a pill.

Side effects

There is a lot of clinical data about why people stop taking their ADHD medication, Hartman explains. Some of them only experience the side effects, for example, like Adina. ‘I tried every medication out there’, she says. ‘Every time I thought, maybe this one will work! But none of them ever did.’

People with ADHD can also find their own way without treatment

‘My anxiety would be through the roof when I was on medication’, she says.  ‘My heart was beating like crazy, I was not hungry and felt full after a few bites.’ At night, she could hardly fall asleep, while she could barely drag herself out of bed in the morning.  ‘I had such crazy dreams that I woke up not feeling rested at all.’

But even when medication does help, people still stop taking it sometimes. Student Esina started taking Concerta about a year ago. ‘It generally helps with studying and with my self-esteem’, she says. Yet she, too, stopped. ‘The heart palpitations and anxiety were so scary.’

Own choices

Then there are those who stop because as adolescents, they start questioning whether they still want to take medication, says Hartman. ‘Even if it’s working.’

As a child, decisions are often made for them, while later in life they make their own choices. ‘They may think: it got me through high school, but I’m actually fed up with it now’, Hartman explains. ‘Then you can make the choice to try going without it.’

Another factor may be that symptoms that people perceive as positive are also suppressed by the medication. ‘So they lose some of their individuality, their enthusiasm, energy, or creativity for example.’

For Esina, it was drawing. ‘It is an integral part of who I am and what I do,’ she says. But this changed once she’d started ADHD medication. ‘I became less creative and drew less. It felt like something was missing.’

Fewer symptoms

Finally, some people just grow out of their condition. This happens to a third of all people with the diagnosis. ‘In another third the symptoms become less, while in the rest the symptoms persist completely,’ says Hartman. When symptoms diminish, many people choose to stop taking the drug.

It’s about discovering what works for you

That doesn’t have to be a problem, Hartman believes. ‘People with ADHD can find their own way without treatment. Even if they don’t fit into the narrow definitions of our society.’

She sees ADHD as a spectrum, and people can have more or fewer symptoms. When symptoms are severe and hamper you, you get a clinical diagnosis, often followed by treatment. ‘But sometimes, there is a mismatch between the practitioner and the person with ADHD.’ 

The practitioner wants to reduce the symptoms, while the person with ADHD wants to know how best to cope. ‘The decision on that lies not with the clinicians, but with the individual.’

Starting again

Both Esina and Adina are open to starting medication again. ‘It is very bad for my mental health and self-esteem if I don’t take the pills,’ says Esina. ‘And Ritalin might work if I need to concentrate for a short time.’ Still, she’s not sure whether the advantages outweigh the disadvantages. ‘I just have to pick my poison.’

Adina would also love to have something to help her focus on her studies. ‘But having tried everything, I sometimes feel that no drug is going to help.’

She’s decided she wants to get to know her ADHD better. ‘It’s about discovering what works for you.’ On social media, she finds experiments to do, like seeing how her body reacts to caffeine. ‘But I also find other coping mechanisms to try there.’

Her advice: if medication doesn’t work, don’t keep muddling through. ‘If you want to stop, stop.’ She also recommends getting tested for ADHD if in doubt. ‘It’s helpful,’ says Adina. ‘You can get extra time for exams and sometimes financial support. And it’s nice to know you’re not an academic failure.’

Esina’s tip is to see how other people cope with their ADHD. ‘That sometimes helps, but you have to realise that it works very differently for some people than others.’ As for medication: ‘Whether you take it or not, it’s never going to feel 100 percent like the right choice’, she thinks. ‘You just have to try to find out what works for you and sometimes that requires taking a leap of faith.’

Esina is a pseudonym. The editors know her real name.

Dutch