Light therapy and its influence on ADHD: An interview

 

Nina (27 years, Dutch) participated in the PROUD-study and followed our light therapy. In this interview she describes the influences light therapy had on her ADHD symptoms.

What is it like to live with ADHD?

Please describe your main symptoms.

The symptom I experience as the most troublesome is making new friends. It is harder for me to make new friends, knowing I have fewer emotional and cognitive skills than peers. I am more sensitive to persons and situations and I experience them as more severe.

Besides, it is harder for me to see things in perspective and my perspectives change a lot over short periods of time. This makes it harder to look further in the future when making decisions. I also have less patience and it is harder for me to concentrate on a task. 

How does ADHD influence your life?

As I explained in the question before it can be tough to make friends. Concerning work, my ADHD has positive and negative effects. The negative effects are my lack of concentration, sometimes a job has to be done at a certain moment when I have no concentration, which can be a real struggle. The positive side is that I am creative and my spatial development is good. These are qualities that come handy at my job. Also my intelligence helps me. Because I am smart I can work fast at the moments my concentration is good, in order to compensate for the moments where my concentration is lost.

Do you think ADHD has any positive influences in your life?

It sure has, but these influences often last for a short period of time. I can be really enthusiastic and I am good at identifying people. This quality makes me a really good friend. Also my creativity is a positive effect of ADHD.

How have you been treated (medication/ psychotherapy)? What are the effects?

For a year and a half I have lived internally in a group especially for adolescents with ADHD and/or autism. Here I followed a training to improve my social abilities, how to engage in relationships with others and to be more independent.

From my 16th I take medication. I have switched a lot and tried different kinds of medication. Much of them did not work well for me, I even tried anti-depressants which made me feel sad. I am currently taking Stratera (short acting) and this works well for me. I don’t take it regularly but only at moments where I think I need it.

Study and intervention

How did you learn about the study?

I am regularly searching the internet to learn more about ADHD. This time I was searching information about comorbidity and neurodiversity and this is how I found your website, by chance.

What motivated you to participate?

It is a good thing that more research is done and I find it important to contribute. The more research is being conducted, the better others with ADHD can be helped. It is of great importance of me to be able to be a part in this. As long as we do not contribute to this kind of research, nothing will chance.

What were your expectations about the study before you started?

To be honest I did not have any expectations because I did not want to be affected by them.

What intervention did you participate in? When?

I participated in the bright light therapy from the 18th of October (2018) until the 10th of January (2019).

What did you like about the intervention? What did you dislike about the intervention?

At the beginning it was kind of hard, I found it really hard to be sitting still half an hour in the morning. Normally I rush through the mornings and do not really sit still at all. My solution was to put the lamp at my nightstand and sit in bed for half an hour in the morning, waking up next to the lamp. You can adjust the brightness of the lamp so I started with dimmed light and increased brightness step by step. Important is to sit upright because otherwise there is a chance of falling back to sleep!

In the beginning I had not realized what an impact this therapy has on your daily life, you really need the motivation to sit through, every day. After some time I got adapted to a new rhythm which made it easier to follow the light therapy for 6 times week. Only on Saturdays I skipped the sessions because of the weekend.

Was the intervention helpful?

It definitely has positive influences. The biggest change I have experienced is the adaptation to a more natural day/night rhythm. I was hoping a side effect would be falling asleep faster but unfortunately this was not the case for me.

The first days I experienced some negative side effects, which are explained in the bright light manual. Maybe it would be better if I had not read the manual because I was so focused on the experience of these side effects. What I felt was a really grumpy mood in the mornings. Luckily it only lasted for a few days.

Are you planning on continuing the intervention?

No, I have no plans of buying a lamp myself. Looking back at the intervention I think I would benefit more by participating in the aerobic exercise intervention, because sitting still for half an hour without a clear purpose is tough. Of course I did adapt to a better and more natural day/night rhythm because of the bright light therapy, but I think this could also be accomplished by going to bed at the same time every day.

Was it difficult/easy to use the App?

Definitely not difficult. The researches informed me about the sensor and how it might be inconvenient in the beginning but I only had to get used to it during the nights. The app was really clear and straight-forward, easy to use. I did forget the phone a few times, making me drive back home, but if you wear pants with pockets this should not be a problem.

Would you recommend other people with ADHD to participate in the study? Why?

I would definitely recommend it to people who are interested in this study and are motivated to participate. You really have to do it because you want it, not only because you want to help others.

Any suggestions/ways that the researchers could improve the experience for people in this study?

In my experience the study is set up well. Sometimes something went wrong (system was not installed right so they had to send me a new set, this set came without a wristband, red.) but the researchers handled it well and professionally. The researchers were cooperative and I liked participating in this study.

Lisa Bos, MSC works at Karakter Child and Youth Psychiatry and Radboud UMC (Nijmegen, the Netherlands) where she works as a researcher for the TRACE project and the PROUD-study. Both studies focus on additional treatments for ADHD and a healthy lifestyle which are also her main interests. She finds importance in studying socially relevant topics and improving the quality of care for ADHD patients.

PROUD study interview with participants, part 3: Managing ADHD with light

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This month we interviewed a 22 year old female college student who took part in the CoCA-PROUD study in Frankfurt. I would like to thank her for sharing her valuable experience as a participant in our study and what is it like to live with ADHD.

What is it like to live with ADHD?

I’m usually very chaotic and it’s difficult for me to keep organized and remember appointments. I get distracted quickly and it’s hard to concentrate. My fellow students and friends find it sometimes annoying. I had difficulty with concentration and organization even in elementary school and not much has changed since then. But today I do have conscious strategies to organize myself a bit better. That helps in some situations.

I was only diagnosed with ADS 1.5 years ago at the age of 20. I was examined in elementary school because of similar problems and my parents decided me to take part in a psychological therapy but a diagnosis wasn’t given. On the one hand it was a relief when I got diagnosed, because I always thought I have problems in these things. But on the other hand, it also feels strange to have a diagnosis. Nobody really knows about it except my parents, my boy-friend and some best friends. I find it uncomfortable to talk about and I don’t want everyone to know that I have problems in these things, because so many people have prejudices.

For 1.5 years I’ve been taking medicine regularly. In some situations, I can tell that it helps, like to be able to concentrate better. In other situations, the effect isn’t as clear. But my boy-friend notices immediately if I haven’t taken my medication.

For me the positive side of ADS is that I often have more ideas than other people do and I also react more emotionally, for example when I’m happy. But still, on the medication, however, I also notice that most of the time I’m not as emotional as I normally would be.

Light therapy to manage ADHD

I saw the flyer that was posted on the homepage of the Department of Child and Adolescent Psychiatry at the Goethe University Hospital Frankfurt. I was searching online about research on ADHD because I was interested in research on ADHD in general and I wanted to learn more about the types of interventions investigated in the clinical study. Actually, I was most interested in the light therapy. I had read about it before and wanted to give it a try. So naturally I was excited when they told me that I was assigned to the light therapy group. I did the light therapy for 10 weeks starting in June 2018. They gave me a specific lamp and a smartphone with an app. I also had to wear the light sensor day and night, but it didn’t bother me. At work I wasn’t allowed to wear the sensor. The lamp was easy to use, however the light therapy needed to be done very early in the morning before I went to work. During the week, it was sometimes hard to find the time to do the light therapy early in the morning before heading to work. It was really hard to get up that early on Saturdays for it. That’s something that I didn’t like about the therapy. The app was easy to use. The feedback didn’t always work right, but that wasn’t important for me. During the 10 weeks of light therapy I felt much better in the mornings; it was easier to start the day and to get into the day. So in that way it was very helpful for me. I did not recognize any effects on my difficulties to concentrate or being organized. I would definitely recommend to participate in this study and to use the light. I am planning to buy one and to do light therapy on my own.

The interview was done by Jutta Mayer. She is a psychologist and psychotherapist at the University Hospital Frankfurt and the clinical project manager of the PROUD study which is part of the CoCA project (www.coca-project.eu).

 

Living day-to-day with ADHD and experience of the CoCA clinical trial

Below is a recent interview from a patient who took part in the PROUD study in London  I would like to thank him for taking the time to answer my questions, his articulate descriptions provide a fascinating insight into what it is like to live with ADHD on a daily basis and his reflections on the PROUD clinical trial, provide us, as researchers, a valuable insight into what it is like to participate from the perspective of a patient.

  1. What is it like to live with ADHD?

Please describe your main symptoms. Have your symptoms changed since childhood vs. adulthood?

I find myself easily distracted. It is very difficult for me to carry out long tasks that require a lot of attention or very tedious tasks. I have racing thoughts going through my head 24/7 and it is very difficult for me to shut them off and focus on what I am doing. I also find myself experiencing mood swings very often. I have multiple highs and lows throughout the day and it is very difficult for me to maintain a stable mood. Also, when I read it is very difficult for me to retain the information and remember what I have just read. I also have trouble trying to organize my thoughts and speak in fluent sentences because my mind is thinking about so many things and I just want to get all of them out.

I would say my symptoms have gotten worse as I transition into adulthood, but it could be because I am more aware of what is going on and the science behind it. I always had anxiety when I was a kid but never really depression. I notice that as I get older I find I get down into slumps and feel really unmotivated. That is the main difference from my childhood and adulthood experiences.

When were you diagnosed with ADHD? By whom? How did you feel about getting the diagnosis?

I was diagnosed when I was roughly 12 years old. I went to see a Doctor to get tested because my reading comprehension was very low and my test taking ability was terrible as well. They discovered that I had ADHD as well as Performance Anxiety.

As a kid, you never want to be told that there is something wrong with you, but it was good to know why I was having the thoughts I had and what exactly was going on. This led me to do extensive research on these mental illnesses and get a better understanding of what was going on and how to better handle my symptoms.

How have you been treated (medication/ psychotherapy)? What are the effects?

I was treated for my anxiety with Anti-depressants as a kid but came off of them due to them making me emotionally numb. I was never treated for my ADHD as a kid because the doctors thought that Anxiety was the main culprit of my problems, but I have actually discovered that ADHD is the main issue.

I did have a psychiatrist for a while as a kid, but I can’t remember much from the sessions and I don’t think they were very helpful. I did do CBT towards the end of 2017 and that did prove to be quite helpful. I just recently decided to get treated for my ADHD with medication just after I finished the Trial at Kings College because I felt that my symptoms were really beginning to affect my life. So I am currently on 40 mg Elvanse and I am on the waiting list for CBT to try and give psychotherapy another shot.

How does ADHD influence your life? (Work, friends/partnership, hobbies etc.)

I am an Actor, so remembering lines and understanding things thoroughly is absolutely crucial! My ADHD comes in the way a bit because sometimes I zone out and don’t completely listen to instructions or other actors. Also, reading scripts can be a bit difficult in trying to retain the information and focus on what I am reading.

I find that it hinders my relationships because I am a bit all over the place sometimes and do not give my friends or family the time or attention they deserve. I have also found that my ADHD causes regular mood swings so sometimes I am feeling depressed and do not feel like doing anything. This affects my work and relationships as well as my hobbies.

Do your friends/ colleagues know about your illness?

Yes, they do. I find it extremely important that everyone understands why I may act strange sometimes and also, they will understand me better. It is not something that I am ashamed of. It is just the way my brain works.

What is the worst thing about having ADHD?

The biggest issues are not being able to focus or getting easily distracted. Another of the big issues I have is the depression side of things. It also drains all of my energy and I end up not feeling like doing anything.

Do you think ADHD has any positive influences in your life?

One of the big benefits of having ADHD is always planning everything! I have to always be very prepared, but it is also a bad thing because it causes me anxiety sometimes. But then again, I don’t believe I would be the same person I am now if I didn’t have these issues.

  1. Study and Intervention

How did you learn about the study?

I believe I learned about the study from the Clinicaltrials.org website.

What motivated you to participate?

I absolutely love psychology and I am always interested in learning about the things that affect me personally. I am always doing research on mental health because it allows me to get a better understanding of what is happening on a more scientific level. It gives me more insight and allows me to better deal with my symptoms.

What were your expectations about the study before you started?

I expected to get a better understanding of ADHD and even finding a new strategy on coping with my symptoms.

Which intervention did you participate in, when?

Exercise intervention.

What did you like about the intervention? What did you dislike?

I liked the fact that it kept me busy and it also forced me to be proactive and accountable because I couldn’t lose the phone or the wrist band tracker. It made me work on that aspect of my ADHD because I do tend to forget to do things and I am always losing things. I also found that my depression is onset when I am not doing anything so having to be accountable for this exercise and doing what I was supposed to do kept my mind busy.

The only thing I didn’t like was the wrist band and having the wear it all the time because it is quite unattractive, and I do travel a lot so having to keep it while traveling it abroad and charging everything was just a bit overwhelming.

Was the intervention helpful? (Any effects on ADHD core symptoms, mood, sleep, weight, fitness etc.?)  

I am already a very active person, so it didn’t really change anything as far as fitness goes. It helped my sleep patterns because I was more aware of how much I was sleeping because I had to write it down. I feel like it helped my mood a bit because I was focused on phone ringing and answering the questions, so my mind was wandering off and causing me depression.

Was it difficult/easy to use the App?

The app was extremely easy to use but it was a bit tedious when it would go off every hour or so and was a bit annoying when I was busy or working. Not to mention that I couldn’t cover up the tracker with a sleeve or a jacket because of the light sensor.

Would you recommend other people with ADHD to participate in the study? Why?

Yes I would because I feel like it gives people a better understanding of their mental health and gives them some helpful things that they can take away from the study to implement into their life. Having a mental illness does not mean you are less of a person or less capable, but it is just important to understand what is going on. If you understand what is causing the symptoms, then it is easier to find ways to overcome these issues.

 Any suggestions/ways that the researchers could improve the experience for people in this study?

I would recommend updating the technology and having a more advanced wrist band sensor that looks more like a watch like apple watches or fitbits. It is an amazing study and I am very happy with how it was conducted. I wish I could offer more ways that you could improve the study, but my experience has been extremely satisfying.

Adam Pawley is a clinical neuroscientist at King’s College London. He is running the CoCA PROUD trial in London.