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

When I need you to tell me what to do, Spam, I'll let you know.
Thanks, anyway.
Dear Spam95,

I read your post twice, not quite believing what I read the first time.....

You should be more particular about chosing your words. There are not 'two camps'. Ihave experienced DAs and am in neither 'camp' and do not intend to be. I added to this thread to provide a balanced account of my experience to date. An experience which, I might add, has been pretty horrendous at times. I have been close to crashing my car. I have been close to alienating my husband completely. I could have lost my job if my reckless behaviour had not been stopped. And the point I was trying to make is that I DIDN'T WANT TO STOP. It is an addiction. A strong one. Symptoms include paranoia and extreme euphoria ....a very heady mixture. The 'downs' are awful and the 'craving' are unbelievably strong.

You almost become two people...in fact, I had to see a psychiatrist and he confirmed this....whilst I remained lucid and functioning in some areas of my life, others were completely out of control. That is maybe why it is harder to believe that someone can't just 'stop'.

My family would say to me....'just try......just try harder'..... I'd say it to myself as well. I'd say 'Sue, just bloody stop. You're being an idiot'......it didn't work. The only thing that has started to work is coming off the drugs.

I am sad to read the bickering that goes on here. It reminds me of why I left this forum some time ago and I think it is very unfair for people who genuinely need help and support to have to wade through these remarks.

In my opinion (for what it is worth) I think everyone must accept that DA's have an affect on SOME people. They must accept that this needs to be advertised because the message is not getting through to everyone. It needs to be done fairly and kindly and without slanging matches. I will support and talk to anyone who feels that I could help them but I will not become involved in childish exchanges.

Regards
Sue
People who want to help in a more constructive way can contact the relevant PDUK Campaign Team.

http://www.parkinsons.org.uk/about_us/policy_and_campaigns-1/campaigns/compulsive_behaviour_awareness.aspx

Ray.
okay...and now i've calmed down and realised I was pretty cutting with my remarks....

I apologise Spam95....I realise this is a very emotive subject and this thread has been long and no doubt frustrating to debate at times.....

I stand by everything I say regarding the DA's, but there was no need for me to climb on my high horse quite so readily...i've written posts in the past out of pure frustration that have not been the best worded pieces....:confused:

I hope this thread continues to be of benefit to all and I hope that you can reach some sort of consensus.....or at least politely agree to disagree!!

Regards
Sue
I don't quite know how to put this, but it seems to me that since all the "shouting" started & stopped there have been some very balanced informative posts. I do not like confrontation, even at the impersonal cyberspace level. But, however unwittingly, it seems to have served some purpose to a limited extent
To all who've had a rant!

I have no problem with WHAT you're saying, but with HOW you say it.

The people who wish to put in a mild view are instantly and negatively pounced upon by the people with strong views.

You're right ROS et al, this thread is 'not for the feint hearted'

I'll expect a reply

I think DAs can negatively effect your way of life if you have PD. People on DAs need to be warned. People on DAs can then do what they have to from an informed position.

Balance and non extremism, on either side is needed.

That's what this thread should be about.
I dont intend to hang around the croc infested waters that are this exceptionally vitriolic thread, but i will dip my big toe in this once with my humble offering;

the latest mayo report seems pretty damning data.
i'm not sure that compulsive hobbying (8/321) is that bad a thing, it may depend on the hobby.

however 25 people out of 321 becoming excessive gamblers is very serious.
estimating from the limited figures published, i'd guess that 1 in 10 people on a effective DA dose will lose a great deal of money. i can't see that as being acceptable.

pathological hypersexuality can range from the annoying to calling the police and divorce, but even then 24 people must include quite a few serious cases.

i had been sceptical of the earlier mayo results, and it will be interesting to see the full article, but this seems to be conclusive. though there is always the possibility of methodological error.

a particular tragedy is that the people who need to delay levadopa longest are the ones most likely to have compulsions, so screening is not effective.
the warnings are now regularly given and i think widely understood, but the insidious nature of dopamine rewards are such that i doubt they will actually save the likely victims.

i am intending to ask for an end to requip for myself (to the undoubted relief of Mrs T and the literary world) and i would have to wonder if the risks (1 in 10?) for the newly diagnosed of debt and divorce are worth a 2 or 3 year delay in taking levadopa.
on the other hand i might change my mind when dyskinesia occurs.

end of humble offering.
Dear Spam95,

Please realise that people are not 'feint hearted'...I am certainly not. I just do not appreciate people (in this case you) making sweeping statements that are blatantly untrue. I chose to make the peace because I understand (or can at least imagine) that this has been an ongoing and frustrating thread to participate in.

So I agree with you about it's not neccessarily WHAT you say but HOW you say it....unfortunately, your statement which followed my post fell exactly into that category....along with others...

As someone who has posted on this forum for the first time for over a year it was quite disconcerting to walk into a bit of a battlefield. I posted my story for the good of all members here.

What I was trying to get across, and I think Turnip summed up very well is that I don't believe that warning literature is enough. I don't believe that a warning from your neuro when you go onto DA's is enough. Turnip wrote here

"the warnings are now regularly given and i think widely understood, but the insidious nature of dopamine rewards are such that i doubt they will actually save the likely victims"

This is the real truth of the matter. You don't know it's happening. You feel great at first. By the time you do know it's happening, you don't want it to stop. And you are quite unable to stop it without help to force you to come off the drugs. You become devious and even lie to people you love and would never have previously dreamt of lying to. That is the true danger of Dopamine Agonists.
There is no need to fall out over this. What is important is that people are aware of what can happen. All drugs are good and bad, they all have side effects. The aim of this discussion is to raise awareness, not judge or ridicule people. We are all in this together, doing our best to support each other, in order to cope with living with a chronic progressive illness ~PARKINSON'S DISEASE!

Yes, i'm bound to feel strongly about the dangers of the DOPAMINE AGONIST'S. That doesn't mean I fail to see that the this is a drug that's allowed people living with Parkinson's to regain stability and control in their lives. That for sure, cannot be denied. Neither can the fact that they can have devastating, life changing effects.

Even after coming off the DA's, problems don't go away over night, It takes time. I remember reading on the drug leaflet that one of the side effects is hypersexuality. Some may say that's a bonus. But not when it causes extreme, risk taking hypersexality and you find yourself in dangerous situations that you REALLY CANNOT CONTROL. For me, it all started with what I thought of at the time to be a bit of harmless fun, texting men on flirting sites on my mobile (I’d never done anything like this in my life) No problem, I will stop it tomorrow....So I thought.

Then we come to compulsive hobbying? I went from being a sex junky to painting with watercolours and acrylics...all bloody day and night. I would paint until I destroyed it! I could not stop. This I hasten to add, was on 6mg Neurpro patch combined with Sinemet 62.5mg, 4 times a day. I’d been weaned off high doses of DA’s. I tried them all. In the end it was decided I could no longer take a DA. Levadopa fuelled the DA, it was as though I’d taken an high dose of DA.

When Pokermid approached me and asked if I would talk to Gazelle because she was desperately in need of help, I was more than happy to oblige. Talking through her experiences brought it all back. I could relate to everything she was saying. I encouraged her to call her PD Nurse or tell her Neurologist. She was reluctant to come off Requip xl, it gave her the confidence she lacked. You see, that’s what keeps you there. You feel so good that you don’t want to let go of it. That is why it is so addictive. You fool yourself you are in control and it’s not until you can see your life falling apart that you start to panic and look for answers. But by then, you are hooked.

This forum and others like it are life lines. A neurologist cannot get the message across. Other strategies need to be looked into. Support systems need to be set up. The aim is not to scare people, it’s to support them.
Dare I say anything?

Here goes.

We have three camps.

Those on DA's who are happy. Their partners/spouse/lovers/family and friends are also happy.

Those on DA's who are happy. Their nearest is being driven somewhere between madness and depression. As for the rest, they have been driven away / don't want to know.

Those who were on DA's and can only hang their heads, survey the carnage and use all the willpower they posses to try and not feel shame, guilt, etc.

The happy/happies scoff at everybody. They might not shout but they certainly don't help with their DA induced "I'm alright Jack" superiority complex.

Despite post after post from, normally "Their nearest is being driven somewhere between madness and depression" looking for answers. All we get is "I dont believe in this day and age ... blaa blaa blaa" ... "people taking medication and not reading the manual ... blaa blaa blaa" ... "Dr's not giving a patient all the facts/patients trusting their doctor blaa blaa blaa".

That garbage is diluting this whole thread. At best it gets lampooned, at worst someone who needs help believes anything that they say, think they lack some gumption or other and continue to blame themselves.

I just hope I'm not behind Titan while he makes sure his parachute is folded properly before leaping from plane thats about to crash!!!!

As for Shakespeare "Out, damn spot!".

As for the other two groups, we'll help each other as best we can while the medical world catches up.
http://www.pdonlineresearch.org/news/2010-01/14/new-study-investigating-dopamine-agonist-withdrawal-syndrome-parkinsons-disease

http://www.pdonlineresearch.org/responses/24952/300/authors-describe-dopamine-agonist-withdrawal-syndrome-daws
Well said 'eck!
Hi blue-eyes

Thanks for your reply. Re your first paragraph I'm not quite sure what is more common than I think it is. Do you mean the rapidity of the effect? If so, that is certainly a very important factor to take into account. Incidentally, I was able to check tonight whether an acquaintance of mine for whom d.a.'s are to be introduced in a few months time had been made aware of the d.a. ocd's and she had. That's really why I made the post to give one person's recent experience to see if other people could confirm what the immediate situation is as regards to warnings or the lack of them from the neuros. We know the leaflets with the drugs are still misleading. Krugen 68 has posted that his neuro was quite recently dismissive of and limited in his knowledge of the wide ranging nature of d.a. induced compulsions. What has been the neuro's response to concerns others already on d.a.'s may have expressed I wonder.
Dear all,
I would like to end my participation in this discussion today on a positive note. I have been on the internet on and off since 7am this morning. It is now midnight. That is by no means a record. In between, I have made some lunch. I've cooked a very healthy family dinner. I've talked to my family and my neice who came to visit. That is a huge improvement on where I was a month ago.

Then, I would have ignored my family, eaten biscuits for dinner and told my son to put a pizza in the oven. I would have been up all night until maybe 6am in the morning. Endlessly searching for....god only knows what....until I eventually passed out with tiredness..

As I said before, I still cannot settle well. I still cannot watch a TV programme from start to finish. I still stare into space at nothing and regularly forget (or just don't care) about things I should be doing.

None of this is 'me' ...or not the old me anyway. But I can see an improvement and so can my family and friends. I know I have people I can turn to when things are tough. People who understand and who I can talk things through with and make my world feel 'normal' again.

Please don't judge the effect of DA's unless you have experienced them. If you want to take them that's fine. Physically , they are a fantastic drug. And mentally too, they can give you a confidence you've never had. But that confidence, as cutipie says, can be your undoing. Please be tolerant of the need for ongoing and understanding monitoring and support of some people on DA's. It will never be as simple as 'reading the literature' for these people...and 'these people' may even turn out to be you.....

With kind regards
Sue
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Dear Krugen68

If your Neuro pooh-poohs the idea of DAs causing gambling problems, perhaps he'll be good enough to reimburse the 6-figure sum my local casino was happy to take off me, or a similar sum from local bookies?

Ray.

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Hi,
Well been busy for the day,switch on the computer and it takes me an eternity to wade through the postings which resemble a war zone.
Believe it or not,i don't like confrontation.What i do believe in is honesty,politeness,friendliness and trying to have a discussion,without as spam95 says using "harassing venomous posts".Everyone has their own personal experiences.
Being constantly used as an example by those who chose to put my views down in the most spiteful of ways.Just goes to show how my postings go in one ear and out the other.
I try to put forward balanced views,i have sympathised and explained my stance from every angle possible.I have said i understand the problems many have suffered and that some still do.They shoulden't though should they.A lot of pwp blame the Neurologists.Okay,some must not be doing their job(they should be,or be struck off).However i will constantly say that it is your life.Take control and if the Neurologist tries to dismiss things,pull them up.I took a list of questions with me,all my history included.I left my Neurologist a copy.Planning,using information blueeyes47.Of course!! you tried to venomously put me down in that department also.Even though just out of hospital.Really thoughtful of you.
Cutiepie.You have it right that"the aim of this discussion is to raise awareness".Look back through everything i have written."Awareness is key",from all quarters,thats all it takes.I have costantly quoted this.The minute though that i mention that the awareness must be a balanced view from both sides.Waves of attack ensue.
Again,Eck,Flippin eck not again.Having another dig at a persons right to post.You don't know me Eck.Then spam95 you back him up by saying "well said",this after your posting about venomous posts.I think a lot of people are a little confused,mixed up or just looking for a way to vent their anger on this thread.
So because i and others who all know who they are,many not posting because the nastiness they receive in response, protecting the positive side of taking DA's.Having advice to give on their own experiences.The bullies then come out en masse to ridicule,berate and dismiss what they themselves don't understand because they were adversely affected for reasons they struggle to explain.Are you jealous of the likes of Lorna,Lily and myself.Because we can control and reap the advantages were you could not.You suffer with symptoms we don't have to,do you begrudge us our quality of life.
That is how it comes across.You appear angry,bitter,spiteful,resentful,depressed,confrontational and use the failings of the past and your own intolerance to a drug that works wonders for the majority,to constantly undermine it and those who use it.Is it because you feel left to languish,wish the drug would be suitable for you,then embark on a mission for the minority,quoting figures,yes how figures and percentages can be manipulated or mis calculated.While others get on with their lives using DA's in a sensible,controlled way with a complete awareness.This awareness if not available to some should be in all cases.This cutiepie is the ultimate goal in this thread.Some of us have reached it,is that not what we want apart from a complete cure that is.
All the best
Titan
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Sad, so sad, that after so much time and so many words it is possible to remain so clueless.

"Take control" he says. A Scud missile couldn't have missed the point so magnificently!

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Hello. We all have to take responsibility for our actions regardless of the suspected cause. My husband subjected me to untold heartache whilst under Dopa medication. Does that mean I should forgive him? Does that mean that I should forget his brutality? Does that mean his crimes against me and our children should go unchecked or punished? Most of what I read on these forums about compulsions caused by Agonists are selfish accounts. No-one seems to give a damn about those on the receiving end.
Wow, that's an amusing new name, RoD. How long did that take to think up?

Funny thing, th only 3 people logged on right now are you, me and Titan. Now there's a coincidence!
You must be one of those poor down trodden victims of dopa medication? I suspect you wish sympathy from every quarter and forgiveness for what those nasty drugs did to you?