Interviewing an HD Expert, Part 1: ADHD, Stimulants, and Huntington’s Disease
First in a two-part series.
Something astounding happened recently.
My wife, Jill, found someone who knows more about Huntington’s disease (HD) than she does. Because her father was gene-positive for HD, Jill saw firsthand what the disease does to a person. Many people on his side of the family have also had it, and both Jill and our daughter, Alexus, are gene-positive, so Jill has learned a lot through personal observation and study.
She and I recently interviewed Herwig Lange, MD, a German neurologist who has more than 40 years of experience with HD and juvenile HD. As Huntington’s Disease News’ Larry Luxner reported in 2020, Lange has been researching the disease since 1969 and founded his country’s first HD clinic in Düsseldorf in 1982.
During the course of our 40-minute conversation over Zoom, Jill found Lange to be thought-provoking, and she singled out two important points for me to share. This week, I’ll address what she learned about attention-deficit hyperactivity disorder (ADHD) from him, and next week, I’ll talk about the criteria for diagnosing HD, which Lange thinks should be updated.
ADHD and Huntington’s
As I’ve previously written, Jill has ADHD. As a result, she has been prescribed stimulants, which is common for patients who have trouble focusing.
However, through clinical observations, basic knowledge of the brain, and scientific literature, Lange shared that HD often causes attention deficits, and that these deficits have a different biological basis than the attention issues associated with ADHD.
How stimulants can affect Huntington’s patients
Put simply, stimulants help those with ADHD pay better attention and stay alert by increasing dopamine levels.
The cruel irony is that dopamine levels are already relatively high in people with HD in relation to the damaged dopamine receptors in their striatum. The striatum is the part of the brain that deals with motor functions, cognitive executive functions, and movement control. In people with HD, it’s “much less effective,” Lange said, “with less and less functioning cells.” The relatively high dopamine levels cause the less-effective striatum to become overstimulated, which can lead to an increase in involuntary and hyperkinetic movements, such as chorea and psychotic symptoms. This is why medications that block or reduce dopamine are effective in reducing hyperkinesia and psychosis, he explained.
As a result, Lange said, stimulants can be detrimental to someone with HD by worsening these involuntary movements and causing them to manifest sooner. In other words, it’s like giving caffeine pills to someone who’s already had a gallon of coffee.
This was news to Jill.
Because she’d noticed that her stimulant medication wasn’t helping with her ADHD (and after talking to Lange, she now understands why), Jill and her doctor came to the conclusion that she should stop taking the stimulants.
In sharing this information, Jill and I recognize that what we think is the right decision for us may not be the right decision for someone else, which is why I have to end this column with a few important caveats.
If you think you have ADHD, it’s important to be careful about self-diagnosing. Any concerns about this serious mental health issue, any HD-related symptoms, or taking medication should be discussed with a medical professional.
Note: Huntington’s Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Huntington’s Disease News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Huntington’s disease.