What You Need to Know
An impulse control disorder (ICD) is the inability to stop doing something that is harmful, or could become harmful, to yourself or others. Performing the harmful activity is believed to relieve anxiety and tension. Common examples of ICDs among people without Parkinson’s disease are kleptomania, compulsive gambling and pyromania. Scientists have known for over a decade that dopamine-related drugs for Parkinson’s could be linked to ICDs in some patients. However, it was not until 2004 that people living with Parkinson’s began to learn that ICDs could be a rare side effect of dopamine agonists. By 2007, researchers at the National Institute for Neurological Diseases and Stroke (NINDS) were reporting that these behaviors could affect up to 14 percent of Parkinson’s patients on dopamine agonists. Today, that number is thought to be even higher. Currently, most of the medications for Parkinson’s - including amantadine, levodopa, pramipexole, pergolide, ropinerole, selegiline and others, as well as surgical treatments such as pallidotomy and deep brain stimulation---have been linked to impulse control disorders in scientific studies.
The ICDs found in people living with Parkinson’s include:
•Compulsive gambling
•Compulsive shopping
•Hypersexuality
•Hoarding
•Compulsive computer usage
Compulsive gambling can include bingo, paper or electronic pulltabs, lottery tickets and “scratch-offs,” casinos, Fantasy Football or competitive bets between friends.
“I gambled away more than $450,000 that was supposed to be part of my retirement.” – Walter, diagnosed at age 62
Compulsive shopping involves buying things you do not need, and sometimes in large quantities.
“I bought 110 birdhouses last weekend. I don’t know why. They won’t do me any good. I live in an apartment.” – Carl, diagnosed at age 65
Hypersexuality can include demanding sex and becoming abusive if your demand is denied; talking about sex and your desire for sex at inappropriate times; cross-dressing; and having affairs outside of your committed relationship.
“A friend of mine who was a conservative Christian pastor with a large congregation called me one day. He wanted to let me know that he was leaving the state because he had left his wife of 20 years and their three children. He said he had discovered his ‘soul mate’ at a Parkinson’s support group. She was leaving her husband and two children. He told me that he thought the dopamine agonists that both of them were taking might have had something to do with the situation but that he felt helpless to stop himself. I have not heard from him or any news about him in five years.” – Name withheld by request
Compulsive computer use has yet to be officially characterized as an impulse control disorder. However, there are hundreds of anecdotal reports from people with Parkinson’s and their caregivers about the number of hours spent using a computer, typically “surfing” the Internet.
If you suspect you have an ICD, here is what you should do:
•Keep a drug diary and record changes in your mood or behavior, as well as physical responses.
•If you find yourself starting to engage in any of the behaviors listed above or doing things that you feel guilty doing, talk to someone about it! A support group member, your doctor or someone from your place of worship are potential resources.
•Let your family know what is happening, because the problem affects them, too. Realize that ICDs could be a significant stressor on a marriage.
What can be done to treat medication-induced impulse control disorders?
If the medications in question are dopamine agonists or monoamine oxidase (MAO) inhibitors (for example, Pramipaxole, Ropinirole, Rasagiline, Rotigotine patch), the doctor may have you
•Reduce the dosage of the medication.
•Taper off and stop the drug completely.
•Switch to a different medication.
If the likely cause of the ICDs seems to be related to levodopa or surgery, the physician may
•Have you see a psychiatrist to evaluate whether the behavior is Parkinson’s-related or a separate mental health issue.
•Refer you to a psychotherapist who will help you to identify any cues that trigger the urge to gamble or shop, and then identify actions you might take to deal with those urges.
•Connect you with a social worker or social service agency that can refer you to support groups that deal with impulse control disorders.
•Refer you to a psychiatrist who may prescribe naltrexone, a drug that is used to treat alcohol and narcotic abuse. It is generally considered when nothing else has worked.
Impulsive behaviors can affect you and your loved ones. Don't consider this a minor thing and seek help if you or your loved ones start noticing it.
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