Something struck me while reading the last few postings, I've noticed that people are writing in saying how the stories on here are frightening them, but what noone seems to realise is that if these stories are frightening you - just imagine how frightetned I am - I am living this at the moment - this isn't a story to me - to me this is how I live every second of every day - and belive me when I say the reality is much more frightening than any story your reading on here.

I have watched a beautiful amazing gorgous gentle kind sensitive man turn into a 'monster' in front of my eyes who is cruel to me and who is now basicallys stalking me through no fault of his own or mine, and I am unable to do anything to stop it- and I have lived like this for 10 months and I can't see any end to it.

When it started I didn't realise the seriousness of the situation - this man lives alone and has noone with him at his appointments - we presumed if there was side effects we would get the medication changed, I too was like the rest of you once in believing everything would be ok - I havn't always been in this position. He initially knew he was having effects himself, but wanted to try them for 3 months to see if the effects settled down, but they didn't and he got worse and his brain is now so muddled that he doesn't realise he is having side effects so will not now get his medication changed. If I try to talk to him about it he just gets annoyed with me and won't listen to me.

Trust me when I say as frightening as you think these stories are - they are fairy tales compared to the real thing.

Amy

Oh and I am not going to apologise for asking people who have had the same experiences for their help - only for them I would have been in the looney bin a long time ago - and it is only them that have saved my sanity. I have made one particularly good friend on here - who has helped me through alot, or I might not be here today myself as there was a point about 6 months ago when everything got on top of me and I really did think I was going mad.

I have not sought to antagonise anyone - I have sought help and understanding for the very difficult position I have found myself in, I am glad that not everyone is in my position - and nor would I want anyone to end up in the position I now find myself, which is why I wanted to warn people intitially - I am happy for those of you who have good experiences of this medication - long may it last .

I did say to someone earlier in this thread that maybe someone with good experiences could start a new post about the Good Effects of Dopamine Agonists - then new people coming onto the site could read this as well -and I am sure as there would be more happy stories than bad stories (1/5) that this would reassure new people, but I notice noone did. I can't start this as I don't have a good story - but I personally would love to hear everyone's lovely stories - any takers???

Amy

Hi all.

I'm sure no-one here wants to scare anyone. But no-one should withhold information from anyone either. If someone has been through hell as the result of a drug and feels they ought to tell others of the risks, what's wrong with that?

In my case I was first given DAs in 2000, before anyone knew of any link with OCDs. It was excellent at handling my DA symptoms and I was a happy bunny. So was my family.

Some time later, with the world still unaware of any link between DAs and OCDs, my behaviour started to change: hypersexuality, hyperspending, uncontrolled gambling, etc. My family, although now geared up to support me with PD, couldn't cope with all of this new and inexplicable out-of-control madness and financial collapse as well, and eventually left me. Divorce followed.

But every one of us viewed the PD and OCDs as totally separate issues.

Then came the mysterious bit. By 2002 the DA/OCD link was being talked about by researchers. By 2003 it was apparently common knowledge "in the trade", and there was a programme on BBC TV about it on 11 Aug 2003. Unfortunately, I was unaware of all this, and my crazy life carried on. However my neuro DID know, as his notes in my medical file show, but he chose (a) not to tell ME, and (b) not to change my medication in any way. Despite him being well aware of all my weird and dangerous behaviour (I'd personally kept him updated on everything I'd been getting up to).

And so it went on, getting worse and worse, until late 2007, when purely by chance I discovered BY MYSELF, on the internet, a research paper in the USA investigating links between DAs and OCDs. Eureka! Back to my neuro I went, and got my medication changed straight away. Bingo! All the weird behaviour ceased immediately.

What I still don't know though is WHY my neuro knowingly kept me on this mind-blowing poison for 7 years, knowing how it was destroying me. What I DO know is that had I not discovered the DA/OCD link MYSELF, I'd still be on the DAs now. Or dead.

What I ALSO know, for certain, is that there are still PD patients out there who, like me, were put on DAs in the early days, and who are STILL suffering massive negative behavioural OCD side effects without knowing their drugs are the cause.

Many of these poor souls don't have computers, or even know what a forum is. They've probably heard nothing more about PD progress since the day they were first diagnosed. They are the invisible thousands who need our help and understanding.

Ray.

Dear all,
Thank you for your posts on this topic discussing the upsides and (largely) downsides of Dopamine agonists. However, we are taking the decision to close this thread which has reached over 250 posts. The topic will not be removed however, forum members will not be able to add further posts.

The discussion has been a very emotive one and it is now spilling over into other forums and causing a number of people to feel scared, upset and threaten to leave the forum. Moderators have been receiving increased complaints.

While we realise that you are free to simply open another thread discussing the same topic, we would ask that you respect this decision for the time being in order to allow some time for things to normalise between forum members. We’re hope that you agree that this is in the best interest of all.

If you have comments about this decision, please feel free to contact the moderator using the link on the left of the screen.

Best regards,
Ezinda