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janehdavis

Impulse control disorder

38 posts in this topic

My spouse, like 18 % of those with Parkinson's, has developed an impulse control disorder. I am sure that the number is much higher than this, but my guess is that people are uncomfortable talking about it.

 

My spouse and I have been in therapy for two years trying to come to terms with it. Our neurologist has no idea what to do, and when we talk about it to the medical folks, they snicker. This is NO LAUGHING MATTER. We need help getting this resolved. I feel it is like an addiction. Spouse went to a psychiatrist about it and the psychiatrist told him to just stop it or not talk about it with me. Hello??? That is not much help!

 

Any input would be extremely helpful!!

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What meds is the first question that should be asked. Mirapex and Requip are terrible for compulsive behavior of all kinds. Sex, shopping, gambling, baking, reorganizing, and the number one compulsive behavior is internet use.

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He was on Mirapex two years ago and that stopped. He is on Sinemet. As we know, Sinemet can cause these behaviors also. I feel doomed..

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It must seem overwhelming. I hope you can find a way to not feel doomed. Here's my thoughts: Not all medical professionals are helpful. Dump the psychiatrist! Is your husband seeing a Movement Disorder Specialist? If not, see if you can find the best one around. Make sure you go to all appointments and, if needed, talk to the MDS on your own. Ask the MDS for a referral to a counselor or different psychiatrist that sees PD patients. The issues are different and not all counselors understand the complexities that come with PD. Another thing you might ask the MDS about is neurocognitive testing. While it won't explain the compulsive behaviors, it may help you know if there are some other cognition issues that might be making the situation more difficult. Another thing to consider is traveling to a PD clinic with experts in another location for a second opinion consult. Sometimes in research centers, they may be able to find something to explain what is happening and have some diffferent approaches than the doctors in your community have offered. Also, traveling for a special consult will give your husband the opportunity to focus on the problems in a new way and perhaps be able to see the issues from a new perspective provided by the "experts". This is hard. I am confident others on this group will have some ideas and words of encouragement for you too.

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Just re-read your original post. No medical folks should snicker about the problems you are describing. They clearly aren't equipped to deal with the problems that come with PD. You may need to dump them all and find a new team. Have you posted on the "Ask the Doctor" forum? Dr. Okun usually offers very practical advice.

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It seems to be across the board that most medical folks do not know how to deal with this issue. Military and the NIH have both had the same reactions. Yes, my spouse goes to a movement disorder specialist. We are both seeing a counselor, couples therapy, and have been doing that for almost two years. She is not working on getting him to stop, but working on how it is affecting our relationship and making that stronger. He is due to go back to his doc and I always go with him, but this time there will be many questions in hand. Here's the bummer, I am an RN and my spouse is a physician. I think that might intimidate the medical field... maybe or maybe not.

 

This issue is a big issue, not just for us, but for many with Parkinson's. My guess is many are having these issues and don't have anyone to talk to, or are too embarrassed to discuss it. I want this subject to become more in the forefront so people can find the support they need. Different plans of therapy in dealing with this would be very instrumental.

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You are right, you are doing everthing and still not getting the help you need. I wonder if him being a physician and you a nurse impacts the care he receives with other doctors deferring to him when making recommendations. Are his physicians people he practices with or has known as colleagues? If so, would it be possible to see someone that hasn't known or worked with him in the past? You are right, this is a big deal for everyone impacted by PD. I do feel it is essential to have counselors that work extensively with PD patients. Others just don't "get it" or recognize the brain changes that occur in PD. I think the same is true for PT, OT, Dietitians, and others. Good luck to you and I hope others on this discussion group will have more ideas for you.

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Jane,

The hard thing is that the person with the impulse frequently sees nothing wrong with what they are doing. Even if they do the feeling is so good they keep doing it. There was an episode of Private Practice one of my employees told me about that featured a woman with PD and she had an impulse to have sex. she knew it was wrong but liked the feeling. It was a different take on PD than you see normally.

coach T

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Thought this guideline from Canada sums it up well "This syndrome may be difficult to manage." Here's the link to the full set of guidelines: http://www.parkinson...elines_2012.pdf. I find the term dopaminergic medication misuse quite an odd phrase since most PD patients aren't misuing their medications but taking them for benefits. Level D means "Expert opinion, formal consensus".

 

 

 

 

 

C28

 

Clinicians should be aware of dopamine dysregulation syndrome (impulse control disorders), an uncommon disorder in which dopaminergic medication misuse is associated with abnormal behaviours, including hypersexuality, pathological gambling and stereotypic motor acts. This syndrome may be difficult to manage.

 

NICE Level D(GPP)

Edited by Golden01
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Golden 01- He does not see anyone that he has worked with, thankfully. But I do think that they all stick together. I like the idea of counselors that work directly with PD patients. That makes such sense! I will research that and see what I can find.

 

I will review the link from Canada. Thanks.

yes this syndrome is difficult to manage....

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jhd1104,

 

Check to see if the nearest Parkinson's Center of Excellence has a neuropsychologist on staff--I work with one in Kirkland, WA and she has been great. There are actually three at that clinic alone. They work with patients with PD and MS.

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I have searched for a Parkinson's Center of Excellence in my area, and can't find one. I think I will contact the local Parkinson's office and see what they say. Thanks!

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Great idea! We saw a neuropsychologist on staff at the Muhammad Ali Center in Phoenix when my husband did the neurocognitive testing. He was going through the testing to make decisions about continuing to work. The tests took care of our fears that his cognitive abilities had slipped and we decided on some other therapies (voice, pt, etc.) so he could keep working.The doctor was very helpful. Their staff did not offer any ongoing counseling services but his MDS has offered a referral, if needed. My husband was only on the dopamine agonists a short period of time (4-6) weeks and didn't do well (nausea, fatigue, mental cloudiness) but didn't have any of the compulusive behaviors that can come from the medicines. More recently, my husband has had to leave work on disability due to PD and we thought we might need to see a therapist knowledgable in PD to help us with that adjustment. It's been three months and we've both sailed through the change so far. In fact, until writing this, I had forgotten about getting the name of the therapist!

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Great news! The experts at the PADRECC should be able to provide expert advice and care. I hope they will really listen to you!

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It can take a while for the compulsive/impulsive problems that begin on Mirapex to change, and I think that can be exacerbated if the person is still taking sinemet. Yes, for some people just getting off Mirapex is enough to stop. But for others, it can take a while. Dopamine is a powerful chemical and our brains are complex. When my husband struggled with these problems I had to remind myself (and him) that his brain had basically been hijacked and chemically-rewired to reinforce bad behaviour. What we needed, and eventually succeeded at doing, was fixing the wiring so he stopped. You didn't mention what his disorder involves. For my husband it was gambling, shopping and sex. Once he was off the Mirapex the shopping and sex issues tapered off rather quickly. The gambling took longer, but he did get past it. Perhaps DBS is an option to consider? Many people with DBS are able to cut back on dopamine therapy. I wish you well.

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I didn't know that the problems could take awhile to change, I thought once Mirapex was decreased, the complusive behaviors went away. This is a difficult problem and not talked about much. I think doctors may minimize the impact.

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My wife's compulsions did not go away until the day she went off them. She was titirated down over a month also.

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I've been on mirapex for ten months increasing the dose slowly .ive noticed I lose track of time while on the net, five hours can pass before I raise my head off the screen to check the time .

To combat this I use a stop watch , set the amount of time and the alarm kinda jolts out of my funk...... Main thing is I'm aware of this side effect, my wife watches me also....... It's kinda creepy lol

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It's a good thing that you have your eyes wide open when it comes to Mirapex. I also started spending way too much time online but what was even worse for me was the compulsive eating of reese's peanut butter cups, shopping more in 6 months than I had in the previous 6 years and the gambling which I'd only done twice in my lifetime before the Mirapex. I started gambling up to 2-3 times a week at the worst point. The withdrawals were terrible and it took quite some time for me to even begin to feel normal. I am finally past it for the most part now. I wish my doc had never given me Mirapex. I take Sinemet now without any side effects. Hopefully that will remain the case. I can only hope.

 

 

I've been on mirapex for ten months increasing the dose slowly .ive noticed I lose track of time while on the net, five hours can pass before I raise my head off the screen to check the time .

To combat this I use a stop watch , set the amount of time and the alarm kinda jolts out of my funk...... Main thing is I'm aware of this side effect, my wife watches me also....... It's kinda creepy lol

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I've been off Mirapex for about three weeks now i think I'm not as compulsive as I was I'm still on an agonist So I don't really know. Having Parkinson's is such fun, It plays with your mind, It plays with your body, The drugs play with your mind And with your body. Only my wife really knows for sure what is going on With me I think

 

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Luthersfaith,

I am sure your wife knows what is going on with you, please listen to her as your view of what is going on is skewed. Speaking from personal experience with my wife on agonists. things she did seemed perfectly normal and right to her.

Coach T

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Someone please remind me why should PwP risk the development of severe OCD (obsessive compulsive behaviors) by starting treatment with high doses of dopamine agonists? to avoid early dyskinesias? ...no, correction, to possibly avoid early dyskinesias? ....correction again, possibly avoid for less than 5 years the appearance of non-disabling dyskinesias? No, thanks.

 

One might argue there are patients who cannot tolerate sinemet and do very well on the agonists. Or that all PwP, especially those with YOPD, will eventually need to take dopamine agonists to reduce the "off" times and extend levodopa response. At least now most patients are warned of the agonists-associated risks of developing OCD. As coach T said, caregivers should keep a close eye on the patient to recognize the onset of OCD as soon as possible. The patient may not always realize his/her abnormal behavior with devastating consequences.

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