DOPAMINE AGONISTS - Should people be warned about possible dangerous side effects?

Its an emotive topic isn't it.

Its all very raw at the moment.

Aristotle once wrote that those who are angry at the right people, time, place, and degree exhibit virtue or excellence. Although science has generally focused on a rational explanation of human behavior, it is often the feeling side of our nature that influences our thoughts and actions.
(wish i'd written that, it was some ponce at the Univeristy of the Pacific)

I'm so sorry it didn't work out, Amy. You had to try. You went all out. I'm sure once his meds have changed - and they will be, like it or not, he'll look back with huge amounts of regret. If he goes through the same number of golf balls that I go through in a round, he'll be looking at his bank balance with a huge amount of regret as well.

That was the weird thing about the OCD. The constant need for reward, gambling, golf whatever. It never made you 'happy' or even content. It always finished a total anti-climax and the feeling "It'll be better next time" then I'd be off obsessing about how to make it better next time.
Back to the topic -

All medication carries a side effect, whether its asprin or whatever.

The question is does the risk outweigh the benefits?

I was thinking should I take half a viagra during the day, just enough to get it past my slippers, and a full tablet at night, to stop my rolling out of bed.

Having read the side effects (look up priapism) I'll just buy extra slippers and put cushions round the edge of my bed.

Bottom line we, patient and partner/carer/mentor Need to be aware of the possible side effects, from nausea to whatever extreme. If you cant move, its a no brainer. If its starting to get out of control, its time to change.
Knowledge is power
and hope is everything

That came from an American Parkinson's web site.
(wish i said that too. in fact I'm off to start a new thread - things I wish I said - )

Like the last taggart I watched where DCI Burke told someone "You couldn't find your bottom if it sat on your face" only he didn't say bottom.. i'm paraphrasing to get it passed the moderator...

I actually don't have anything original to say. I just scour the t'interweb thingy and cut and paste other peoples material to make myself seem knowledgeable. If only everyone else admitted they did the same, I wouldn't feel so inferior all time.
He Ray

I meant what you said 'sounded' heartless (you sounded so strong and right but I'm a soft touch) - in view of the fact that he is only the way he is becasue of the DA's. And yes I wanted him to leave me alone, but I wanted him to be normal again as well - in all my posts I have blamed the medication, it's not that this man is harrassing me - it's that he is only harrassing me because of what the medication is doing to his head - that is the part I was trying to convey to people, that without DA's he wasn't like this. What I wanted, and I've said before, is for things to go back to normal and for this man to be the way he ws before DA's and love me as he did, and for us to spend the rest of our life together, which is what we were planning when they swapped his medication.

As for enjoying the benefits - I meant when you are in your own little world at the time.

Anyway it's all water under the bridge now.

Take care Amy
Hi Ray, I'm pretty sure that Amy didn't mean to upset you, however, it must be pretty hard for those who haven't experienced the side effects to take it all in.

If you think about it the things that you have just listed would seem impossible for 'rational' people to do and don't forget, when we were under the influence of the DA's we probably looked ok to the outside world...God I looked ok to me!!!!

In your last answer to Amy's post I for one can hear the anger and sadness that the experience brought to you and quite rightly so. I too am angry and I often feel that the life has been ripped from me. Our live changed because of PD then the side effects of drugs just exasperates the whole situation. How many other conditions can cause so much pain and loss to people.

I do understand how some newly diagnosed people can get upset when we try to warn them of the possibilities of the side effects but they too must try to understand how we, the people who have lost everything that we worked hard to achieve, this includes relationships and loved ones feel. Our experiences can not and should not be brushed aside, we are the only people who are able to tell you the truth. The neuro's can't because whilst they might know of such stories, they haven't experienced the effects of these medications.

We are not just moaning, or trying to scare monger. We genuinely believe that our stories could help others. Perhaps those of us who have experienced these horrific side effects should pool our resources to combine our stories in some form of written words that can be put out as a publication. I see this as homing our anger and frustrations into getting the seriousness of this subject out there for all to see.

I just wish that back in 2003 when I was prescribed Ropinerole, somebody would have told me the truth. i know that the drugs are a real help to some people, however they can be very very dangerous and they ARE capable of ruing lives. That is a very serious situation which must be addressed.

Like Ray, I lost my lifestyle, but thankfully my lovely hubby is still with me, God knows how he managed to hang in there. There isn't a day goes by that I don't thank God for this, but my behaviour lost him his lifestyle too and the stress of my condition has medically taken it's toll on him.and We will never again be able to have a holiday, we live on benefits and I am paying my debts off very slowly. This means that a proportion of our benefit income is paying back my creditors and they don't care as long as they get their money.

I was a children and families social worker for 26 years, I have spent a lifetime trying to help others and I do not believe that I deserved this. So yes I too am angry Ray, as I am sure many more of you out there are. Why don't we get our feelings and experiences out there for all, particularly the medical professionals to see.

I am sorry that this post is so long but Ray's last post really did hit home to me, please, those of you who feel upset by this remember, we all need this site to air our feelings and experiences about PD. The fact that it isn't pleasant is something that we all know, so cut us some slack please and if you don,t like the content then don't read the thread.
Indeed it is, good luck!

Do you think "Ray of Sunshine" would be a good book title?
Other suggestions welcome.


Hello Amy,
So sorry to hear that things didn't go well with your friend. I do hope that you will find the strength to move on. I also feel sorry for him because he will eventually burn himself out or indeed something much worse, one thing for sure is he wont be a happy man.

Take care
Glenchass xx
my last post was to amy of course.

will respond to glenchass as soon as i can xxxx


Why are you continuing to repay debts which are not your fault?

What if those debts were £5 million, say?

What if you didn't make any more repayments - would they take you to court?

If so, you could call an expert witness to explain your state of mind at the time.

The court could then rule that you cannot be held responsible for any debts incurred whilst you were on DAs. This is what happened to me: I now have a court ruling to wave under the noses of debt collectors. The expert would charge you a fee, but could save you many thousands.

Also, have you considered suing the consultant or the NHS? Both are insured against such claims.


Ray of sunshine - Can't believe what you have gone through and come out the other side.

Glenchass - I think you should look into what Ray is saying.
DLH: And I haven't yet mentioned the REALLY naughty & weird stuff! LOL



Tell me more Ray.........!!!
Thanks for the advice Ray, if I could stop paying it would so help us. The benefits are low enough and having to try to pay off debtors is a nightmare. I don't know who I would need to see for advice, do you thinks I should book a legal advice appointment?

This whole thing makes me sick with worry and I know it doesn't help my condition. If things go on like this I know that I will never pay off those debts and I feel like we are being punished for something that was out of my control.

It was my hubby that told the neuro of my out of control spending during one of my check ups and at that time we had no idea that the DA's could be the cause. When he was told he put his pen done very slowly and said 'tell me more'. My hubby told him and I can recall glaring at my oh as if he was betraying me. Neuro sent me to see a psychiatrist but I never did find out what he said about me cos the report must have gone to the neuro.

I do feel so badly for my hubby cos he too suffers because we can't afford things any more.

I do not want to intrude- I am sure Ray will give you good advice. But in the meantime have you thought of the Citizan's advice bureau? Also your consultant sounds pretty clued up so maybe a letter from him? To wave in front of creditors.
Yes, seek advice from the CAB or a solicitor. As my case was in the criminal court I was eligible for legal aid, and got my solicitor, barrister and expert witness paid for. In the civil court you’d have to pay these fees yourself (unless you were awarded costs), but even so you’d still presumably be well in pocket if the outcome were the cancellation of your debts.

Your expert witness would need to be an experienced neurologist, preferably a professor involved in the latest research and drugs, who specialises in PD. The expert I used had already successfully testified in numerous similar cases, and knew the legal complexities. I got his name from another PD contact on the internet. He will want to see your full medical records, a copy of which you can obtain from your GP (you’re legally entitled to this, and they don’t mind), who may charge an admin fee. In my case I had a 3-hour meeting with the professor in London, but he wasn’t required to attend court – his sworn testimony and report was sufficient.

It’s quite straightforward: if the expert confirms that whilst you were on DAs you had no control over what you were doing, that the drug completely took over your actions and implanted various new and out-of-character obsessions in your brain, and you couldn’t tell right from wrong or know good from bad, the court should rule that you cannot be held responsible for your actions during that period, including debts incurred.

Thanks for the advice Ray. Will book an appointment with a local solicitor.
Good luck.
I think this is where more support is needed,people come off the meds but often life left in tatters.Many people left in debt,bankrupt,lost family, house,job etc.on top of all this feeling guilty and lack of self worth.Really think some form of counselling and advice help is needed.people coming off cocaine,herione seem to get far more support!!

Dot x
i come off mirpexion when i was on erm i went out of control,i lost lots of friends cus my mind was playin so much tricks on me and i belived wot it was tellin me if tha makes sence to u ,it was awful i had nervous break down cus of all the traumer i was goin through and losing allmy surport through lake of control of mind through a dru and breakdown was far to much for me
i paid the price and iam stillnow to im fine now but still low cus ive lost somany friends who do not understand the real truth of wot hapined to my mind ,so to all those people they nows wheo they r im deepley sorry but it was not me it was drugs and breakdown that made be be so ill in the mind ,sorry
The problem lies within the fact that many people affected by impulsive control disorder caused by the dopamine agonists, the onset can be insidious and overlooked until life altering problems develop. In some cases being forewarned may help but for many, despite being forewarned, impulsive control disorder wins hands down!

Once I'd found out the reason for my weird behaviour I was still sufficiently compos mentis to demand to be taken off the DAs.

The problem is that I was unaware of, and not informed about, these effects for SEVEN YEARS, by which time my life had been destroyed.