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.
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:
Suspicions of partner’s infidelity
Pornography (inc child pornography)
Fetishism (e.g. bondage, masochism, sadism, paraphilia)
Delusions (e.g. grandeur, paranoia)
Threats of violence
Suicides & attempts
Massive creativity change
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.
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.
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.
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 studieshttp://viartis.net/parkinsons.disease/news.0211.htm
18th February 2011 - New research
THE RISK OF COMPULSIONS IN PARKINSON'S DISEASE
Parkinsonism Related Disorders  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.
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.
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
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.
Arch Neurol 2010;67:58-63
Thanks Carole, your support is appreciated.
Kyloe - I'm really glad to hear that you are one of the lucky 76% enjoying the undoubted benefits of dopamine agonists without the awful OCD side effects.
As you can see, this thread is specifically entitled "Dopamine Agonists and catastrophic Obsessive/Compulsive Disorders", with a sub-heading of "OCD problems caused by DA medication". It is specifically for the benefit of those who DO or DID have OCD problems, or who would like to learn from such people.
There are clearly no reasons why you yourself would be either interested in this thread, or have anything to contribute, so have a good weekend.
When the DA manufacturers first (reluctantly) started including risk levels in their "patient notes" the figures varied enormously from manufacturer to manufacturer.
It was clear that no real scientific effort had gone into producing their numbers for OCD sufferers.
One pharmaceutical company even suggested "less than 1 in 1,000". Given that 1 in 4 is now accepted, that was a superb example of how much they'd rather avoid the subject altogether,
It seems to me these DA's affect more people than 1 in 4. It seems the 3 in 4 not affected have a compulsion to sticking their oar into threads which doesn't concern them.
It's like the able bodied using Disabled parking spaces. They are, obviously, disabled in some capacity otherwise they wouldn't have parked there.
Similarly it should be OK for those who claim to be free of DA side effects to express themselves in threads like this which don't concern them, but actually does, because they can't help themselves due to their medication.
My heart goes out to you.
thanks for this thread it is soooo helpful and easier to look at
my O/H has awful phsycosis with ropineral and we are now on a reduced dose and hopefully get off this and onto a new drug when we see the consultant on the 17th june.
please don't be put off by people who seem to be intent on pushing their good relation with these drugs and seem to have no conception of the bad side effects and the effect it has on families and patients.
keep it up and thank you xx
Hi all. Apologies for the self-indulgence, but in response to a couple of requests I've added a few verses to my poem to deal with some aspects not covered previously. Feel free to scroll rapidly past!
Now Raymond was a worried guy –
He had PD, you see.
But worse than that he’d been let down
By Neuro and GP.
For seven years they gave him pills
They said would make him fine.
But as he got more wild and mad
They failed to see the sign.
This quiet gent, a businessman
With big house by the sea,
Was transformed into Nutcase Man
And acted crazily.
When he’d been on these tablets
For all of three long years,
The tablet manufacturers
Announced, amid some tears,
That new research had shown them side
Effects which were appalling,
And major mental change was found
In one in four – that’s galling!
The word was spread around the world
To pharmaceutical folk.
Academics, scientists too,
Were told this was no joke.
In two thousand and three, as well
As two thousand and four
The neurology fraternity
Had all been told, for sure.
But although Ray’s neurologist
Was certainly aware,
He never told our Ray, poor soul,
And left him unaware.
So Ray amassed the credit cards
Fifteen of them he had
Plus bank accounts and overdrafts
He emptied them like mad.
He spent a lot on gambling
And clothing he bought piles;
Not only suits and cruising gear
In all the latest styles
But also lots of girlie things
For which he took a fancy
He liked to wear girls’ lingerie
And change his name to Nancy
His first wife soon departed
And took with her their son.
The house was sold to pay some debts
But still he wanted fun.
Eventually, in two thousand
And seven Ray did Google
Research upon the Internet
As clear as any bugle.
It told Ray why for seven years
He’d been so hatter-mad.
It was all caused by Dopamine
Agonists – so sad.
He realised his Neuro had
Withheld all this research
Despite the fact he knew it left
Ray’s whole life in the lurch.
In all those years Ray didn’t know
Why he was acting weird,
He was completely diff’rent to
The nice guy no-one feared.
Compulsive and obsessive
Disorders they were called,
Which drove poor Ray to bet and spend,
He really was appalled.
To find out all the time that he
Was mad but knew not why,
And spent those years confessing to
His Neuro of his sly
Deeds of gambling, spending, too,
And ladies of the nights,
Cross dressing, violence, fights.
He’d spent much time in police cells,
The psycho ward as well,
But every time they let him go
They sent him back to Hell.
Our Ray had been around the world
On other people’s money
And mixed with entertainers,
Stars, comedians so funny.
At Wimbledon’s great finals,
And every cricket Test,
The rugby world cup finals,
The snooker and the rest.
The ringside seats for boxing,
And boxes for the soccer,
He knew all those worth knowing,
And his life was one big shocker.
Suites at all the best hotels,
Fine dining every day,
He travelled in his Bentley dark,
Ferrari, Merc coupe.
And cruise, of course, on QE2,
Around the Caribbean;
Shore leave in Barbados town
Beats tatty European!
And don’t forget Las Vegas with
His 'copter at the airport:
The first class flight flew through the night
With wads of cash for sport.
Yet all the time that people watched
And saw his wild excesses
The truth was that his addled brain
Found out just what a mess is!
His mind was always paranoid,
And saw hallucinations
Sometimes he’d wake up from a trance
In unknown railway station
He often saw big insects,
Ant armies, giant germs,
And even pterodactyls,
With dinosaurs and worms
He’d carried out illegal acts,
Broke fraud, and other laws.
But his long-term Neurologist
Said nowt about the cause.
The baffled Ray went quite insane
Until two thousand seven
When he discovered all, and changed
His medication – HEAVEN!!
Unfortunately by that time
He’d spent four hundred grand.
So now he’s broke and crushed and sad,
And rents in Slumville-land.
And tho’ the nightmare’s over
And reasons now explored,
The fact remained when barking mad
Ray carried out a fraud.
So in two thousand nine Ray stood
In front of judge and jury
But they dismissed the case right off,
And understood his fury.
The case was closed, the judge decreed
No-one should hassle Ray,
But still he’d lost career and cash,
His friends all gone away.
He’d had to retire early, thanks,
And join all those mad hatters.
Mobility now useless,
And everything in tatters.
His son was thirteen when he left
And now he’s twenty two.
Does not believe a word Dad says
And sticks to Mum like glue.
In nine years Dad and growing boy
They met up only once
When offspring got to age sixteen
Dad thought he’d take a chance
But it was doomed to failure
The son would listen never
He told his Dad to go away
And turned his back for ever
Well one day soon we’ll maybe find
out why the Neuro clammed.
Perhaps he did so for “research”?
If that’s the case, BE DAMNED!
Copyright 27 May 2011
Hi Ray - I had a chat with my PD Nurse yesterday and she thinks I am showing signs of compulsive behaviour.
I happened to mention to her that when I can not sleep at night I do quite a lot of baking, cakes, scones, muffins etc etc. I very seldom eat any of them myself but I enjoy making them. Just wondering should the alarm bells be ringing, would be grateful for your opinion.
Is that your only compulsion, as far as you know?
It could be punding, or simply boredom.
What medication are you on?
Hi Ray - I am on quite a low dose at present. 2mg ropinirole 3 times a day and 62.5 madapar 3 times a day.
Do perhaps shop more than I use to do. If I want something I want it and will eventually get it maybe after looking at it in the shop a few times first.
I am so pleased to see a new thread set up yet again to alert the newly troubled who fear DAs are brnging about life destroying OCDs.
To the Kyloes and Lornas I would like to say again that not all neurologists are to be trusted.
My husband was prescribed 50% more than the maximum dose of Requip XL for 3 years and the neurologist stated categorically that his horrific hypersexuality was nothing to do with this medication, leading to the loss of our life's savings and an almost wrecked marriage.
This forum and our Parkinson's nurse are helping us to rebuild our lives but the withdrawal from the DAs has been hell.
I am afraid that with the new sort order regime this thread will disappear into the graveyard of previous posts as new threads are quickly created and take precedence.
Or have I misunderstood the new system?
I feel it is vital that this information is immediately visible to newcomers who fear that medication may be badly affecting them via OCds. To those in fear I say "Get help quickly."
just to clarify - my point was that the exact figure doesnt matter.
having made that minor point i shall leave both sides to get more and more annoyed, irrational and rude until people are banned again and the thread shut down again.