Hi.

There has been a significant rise recently in the number of new members joining the forum because they or their loved ones have started to show signs of compulsive behaviour - sometimes called "impulse control disorders". They are rightly concerned. They need to know how bad things might get, and what can be done.

There have been numerous threads on this topic in the past, and I believe our newcomers could easily get confused groping around them all. Furthermore many recent newcomers have "signed in" via such threads as "Meet & Greet", resulting in their stories being left there, and possibly "lost" after a few days.

I therefore suggest that this new thread be introduced as a central repository for all future items connected with this issue. Newbies can then be directed here after initial welcoming.

Many thanks,

Ray.

For reference purposes:

There are scores of different obsessions these drugs can cause, and more are being discovered all the time. Here is a recent list. The first 10 are the most common:

Gambling
Excessive lifestyle
Shopping
Hyper spending
Reckless generosity
Hypersexuality
Extramarital affairs
Suspicions of partner’s infidelity
Cross dressing
Pornography (inc child pornography)
Prostitution use
Fetishism (e.g. bondage, masochism, sadism, paraphilia)
Sexual reorientation
Obsessive masturbation
Exhibitionism
Paedophilia
Zoophilia
Visual hallucinations
Obsessive risk-taking
Punding
Delusions (e.g. grandeur, paranoia)
Threats of violence
Violence
GBH/ABH/Disfigurement
Murder
Self harm
Suicides & attempts
Massive creativity change
Singing
Eating

Most affected patients suffer from one compulsion initially, and then more come along. Compulsions usually get worse when doses are increased. Most sufferers become secretive, devious and aggressive, and deny everything - usually blaming the accuser and claiming there ISN'T a problem.

And finally:

25% (1 in 4) of PD patients prescribed dopamine agonists (DAs) will suffer from obsessive/compulsive disorders (OCDs) to some degree.

People who find they initially have NO such compulsions may nonetheless have them kick-in later in life as DA dosages increase. These are merely patients with high starting thresholds. Often, by then, they don't even realise the cause.

Young onset patients are more likely to experience OCDs than other groups.

Ray.

I'm sorry Ray, but this figure you quote that 1 in 4 people taking D.A.'s will suffer from O.C.D to some degree, where exactly do you get it from ?
I was seen yesterday by an eminent Professor in Movement Disorders at the Institute of Neurology and Neurosurgery, in London, and he said the figure was 2 people in every 15.
I don't want to fall out with you, but it is very difficult to make decisions regarding drugs, when there is this difference of opinion.
Yet again , you know I have huge sympathy for what you went through, and the poem you've written is very upsetting when people read it and see how much you suffered.
All I'm trying to find out is the truth , it must be so bewildering for newly diagnosed people to make a properly informed decision on the way their medication should go, and from which group should they choose.
We both want to be helpful, but there's this big discrepancy of an accurate figure, that is the stumbling block between us.
I'd like to get over it , how can we ?
All the best.
Lorna.

lets not start this again PLEASE.
the point is the number of people affected is high.
particular numbers are only meaningful when related to exact definitions of the degree of behaviour.
the difference between 1 in 4 and 2 in 15 is entirely irrelevant and meaningless in that it has no effect on the need for people to be aware and take precautions.
if i had a 2 in 15 chance of being hit by a bus i would still take as much care crossing the road as for a 1 in 4 chance.

one of the latest studies

http://viartis.net/parkinsons.disease/news.0211.htm

18th February 2011 - New research

THE RISK OF COMPULSIONS IN PARKINSON'S DISEASE

Parkinsonism Related Disorders [2011] Feb 8 [Epub ahead of print] (Hassan A, Bower JH, Kumar N, Matsumoto JY, Fealey RD, Josephs KA, Ahlskog JE) Complete abstract

Dopamine agonist treatment of Parkinson's Disease carries a greatly increased risk of compulsive behaviour. Compulsive behaviour provoked by dopamine agonists often goes undetected in clinical series, especially if they are not specifically enquired about. Of those people with Parkinson's Disease taking dopamine agonists 22% experienced compulsive behaviour, and 16% were pathologic. However, when the analysis was restricted to patients taking dopamine agonist doses that were at least minimally therapeutic, pathological behaviours were documented in 24% of people. The most common form of compulsions caused by dopamine agonists are : gambling (36%), hypersexuality (35%), compulsive spending or shopping (26%), binge eating (17%), compulsive hobbying (12%) and compulsive computer use (9%). The vast majority of affected cases (94%) were concurrently taking Sinemet or the equivalent. Among those with adequate follow up, compulsive behaviours completely or partly resolved when the dopamine agonist dose was reduced or ceased. In order to refer to this article on its own click here.

Hi Lorna.

Aren't we being a bit pedantic here? Would the DA/OCD problem be any less serious if it were still the 1 in 7 you quote? Haven't we better things to do?

At my trial in Hull Crown Court in 2009, expert evidence on my behalf was provided by an eminent Professor in Movement Disorders from the Institute of Neurology and Neurosurgery in London, who is also involved in Parkinson's research at UCL. He did indeed quote 1 in 7 to the Court, under oath.

The said Professor is in fact "Emeritus Professor", which means he retains the honorary title of Professor for life, even though he is now semi-retired. Perhaps being semi-retired he has not yet received the latest research figures? These demonstrate conclusively that 1 in 4 is actually the reality.

1 in 7 was indeed the standard figure quoted universally until February of this year, when the revision to 1 in 4 was announced. (The actual percentage was 24% - sorry for misleading everyone). The change was announced on this forum on 18 February 2011 (not by me), only 10 days after the publication of the official report from The Mayo Clinic in Rochester, USA, one of the most highly-respected research institutes in the world.

I hope this answers your queries.

Regards,

Ray.

Quote "lets not start this again PLEASE. "


Why not ?

There are some of us on DA's that have very succesfull results using this type of medication with either limited side affects or none at all.
What angers me is that one reads from many members that "quote" ...everyone is different" Unquote, and then harp on forever and a day as to how bad DA's are for a large mojority, thus detering any new member from trying DA's. THATS TANTAMOUNT TO DENYING SOMEONE THE RIGHT TO SOME QUALITY OF LIFE THAT THEY MIGHT NOT GET ON OTHER TYPES OF MEDICATION

Its clearly obvious that compulsive and obsessive behaviour is even being displayed in some forum posts !

Note to all newcomers......Please be guided by your own medical specialists and make your own informed choice as to what medication to take and when to start it !

Ray, I think it's a really good idea to have this thread. I had absolutely no knowledge of the risks of Dopamine agonists before I started reading on this forum. From my experience in other medical matters, doctors hardly ever warn of the side effects of any drugs. I, for one, greatly appreciate being able to make an informed decision before embarking on what might be an irreversable life choice.
All the best, Carole

Kyloe

The whole point of this forum is to inform people, instead of leaving them to cope in a state of individual ignorance. If there is a pattern of experiences for a part of the PD population, others can learn by it.
For those who love DAs - fine I have no problem in their taking it. For those at the other end of the spectrum, at least this forum raises awareness for the 1% 10% or 25% affected. There is also a mass in mid-range for whom DAs do nothing.

I turned down DAs on the basis of my research on the net, despite laughing reassurances from my 2nd Neuro. Everyone has freedom of choice.

Before becoming so strident, look at the facts for those that can experience problems with this drug class

NEW YORK (Reuters Health) – Just like cocaine and other drugs that increase brain dopamine levels, the dopamine agonists used to treat Parkinson disease can also produce a withdrawal syndrome after prolonged use, according to a report in the January issue of the Archives of Neurology.

Symptoms of dopamine agonist withdrawal syndrome (DAWS) are similar to those of other withdrawal syndromes and include anxiety, panic attacks, depression, agoraphobia, dysphoria, diaphoresis, fatigue, pain, orthostatic hypotension, and drug cravings. DAWS seems to occur predominantly in patients with a dopamine agonist-related impulse control disorder, the report indicates.

“Our findings show that dopamine agonists have a stereotyped, substance-specific withdrawal syndrome that can cause severe, long-term psychosocial consequences,” Dr. Melissa J. Nirenberg and her associate Christina A. Rabinak, both from Weill Cornell Medical College, New York, state. “Based on these findings, we recommend close monitoring of patients—particularly those with impulse control disorders—whenever dopamine agonists are withdrawn.”

The results stem from an analysis of 93 nondemented patients with Parkinson disease who participated in a prospective study of motor and non-motor disease manifestations.

Forty patients were treated with a dopamine agonist, which was eventually tapered in 26. Five of the 26 patients (19%) developed DAWS.

The most common reason for drug taper was the presence of an impulse control disorder, the report indicates. Moreover, everyone who developed DAWS had a dopamine agonist-related impulse control disorder at baseline.

Relative to patients without DAWS, those with DAWS had higher baseline dopamine agonist use (p = 0.04) and higher cumulative dopamine agonist exposure (p = 0.03).

Although both groups had similar disease duration and total dopaminergic medication use, subjects with DAWS had significantly lower Unified Parkinson’s Disease Rating Scale motor scores compared to patients without DAWS (p = 0.007).

Symptoms of DAWS responded only to dopamine agonists, and not to treatment with antidepressants, benzodiazepines, or cognitive therapy when these treatments were given.

The severity of the syndrome seems to correlate with dopamine agonist exposure, the authors add. Two of their patients eventually recovered, but the other three, who had the greatest cumulative exposure, “have been unable to discontinue dopamine agonists and therefore experience chronic impulse control disorders,” according to the article.

“Additional study is needed to identify other risk factors and potential treatments for DAWS and to determine whether DAWS can be provoked by switching between comparable doses of different dopamine agonists,” the authors conclude.

Reference:
Arch Neurol 2010;67:58-63