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Dopamine Agonists and catastrophic Obsessive/Compulsive Disorders

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ray of sunshine

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Posted - 27 May 2011 10:12

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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.

Take care.

Ray.

ray of sunshine

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Posted - 27 May 2011 10:29

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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,

Ray.

Eck

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Posted - 27 May 2011 11:49

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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.

Eck

sooo

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Posted - 27 May 2011 12:19

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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 xxsmile

ray of sunshine

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Posted - 27 May 2011 14:45

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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!


RAY’S TALE

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,
Plus hypersexuality,
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

lizzy p

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Posted - 27 May 2011 16:26

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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.

Lizzy

ray of sunshine

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Posted - 27 May 2011 16:31

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Hi.

Is that your only compulsion, as far as you know?

It could be punding, or simply boredom.

What medication are you on?

Ray.

lizzy p

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Posted - 27 May 2011 16:40

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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.

Thanks
Lizzy

goldengirl

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Posted - 27 May 2011 16:58

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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."

turnip

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Posted - 27 May 2011 17:19

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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.

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