Dopamine Agonists and catastrophic Obsessive/Compulsive Disorders

hi goldengirl

Your suggestion makes good sense.

I'm now to be part of the Steering Group being set up (as mentioned in PUK's Action Plan). I shall note your suggestion, currently i am in the process of reviewing there Action plan and feeding back my comments to Senior management. I have already picked up a few things that are missing or need changing. So goldengirl if you or anyone else has anything you wish to add to the plan, then let me know? If you don't already have my email address, send me a message via the forum and i will give it to you.

Hopefully as someone who experienced side effects and who has learnt a thing or two on this subject over the last few years, i can ensure risk is better managed going forward. Not to mention of course, more accountability, and better support and help for those who's lives have been impacted.

best wishes
bluey
In these calmer waters may I pose a Q? I have become aware that over the past year or so I have started to internet shop, something I had never done before. Also my use of my PC has escalated. I am trying to be aware of both in view of the info I have gained from this forum Neither behaviour has yet caused £ or social problems.
I see 2 neuros. One wants to increase ropinerole, the other has introduced sinemet.
My Q is based on your experience, do I have something to be concerned about re OCD and should I be questioning my drug regieme?
Thank you
Hi.

Ropinerole is a dopamine agonist, and it is now accepted that those who take DAs (whatever the arguments) are more likely to suffer from compulsive behaviour (OCDs) than those who don't, and who generally stick with L-Dopa based drugs like Sinemet.

The latest figures indicate that 1 in 4 DA takers will suffer from OCDs "to some degree". The issue of WHY 75% of them do NOT suffer these problems is unclear, but recent indications suggest that EVERY DA taker will be susceptible to OCDs from DAs, but each patient has a different starting threshold.

So whereas I may go bananas on 0.5mg per day, YOU could still be well below YOUR threshold on 4mg per day.

This would give you the impression that you're one of the lucky 3 out of 4, and you'll happily take the DAs and enjoy the undoubtedly impressive improvement they provide to one's PD symptoms and mobility. You'll correctly report back that you've seen no OCD effects as yet.

The obvious problem there, of course, is that if your consultant gradually - over the years - increases your DA dosage, you could at some stage in the future hit your threshold. Long after forgetting about OCDs.

I can confirm that even when I was going through the worst OCDs imagineable caused by my Cabergoline, my mobility was still excellent. And when I eventually stopped taking it my mobility dropped back to useless. Unfortunately that's the price I have to pay.

Plenty there for you to contemplate.

Ray.
Good Morning all

I was on 8mg Roprinerol and was Inrenet shopping all over the place.I was also driving around to markets and buying tools i did not require.
When i was reduced to 4mg it all stopped.
I am not as confident and my flexability has changed. Simple movements can be a chore.

k9jlk
I was prescribed Ropinerole 10 years ago and as my dosage was gradually increased so was the desire to shop. It happened so gradually that I didn't even realize, I shopped any which way I could, by internet, in person, by catalogue, I ended up with a garage and loft completely full of all sort of things, some were of absolutely no use to me at all.

At that time there were no warnings given by the drug manufacturers or doctors and I was completely unaware that my problems were the result of my medication. I took Ropinerole for three years before I found out that it was the cause of my OCD behaviors and by then I was in debt to the tune of £60000. I am now retired because of my PD and am still paying off the debts incurred out of my pension and DLA. Due to the current financial climate I don't think that I will be able to continue to pay off the debtors and I know that we will loose our home, it's just a matter of time.

To the people out there who say, 'the past is the past, move on' I would say, please tell my debtors that because they constantly hound me for the money I owe, as a direct result of the meds that I was prescribed. It doesn't just go away when we stop taking the meds, but it continues to haunt us, I know that I will be haunted until I die, just by trying to pay the money back and I will continue to worry about loosing my home.

This is an appalling way to live and it would appear that we have no redress.

I would love to have this travesty highlighted and applaud everybody who are trying to bring it to the fore. If I can be of any help, I want to let it be known that I can be called upon.

regards
Glenchass
You can sue the consultant and/or GP who prescribed you the drugs in the first place (hey're insured against such claims), even threaten to get them struck off. You can also sue the NHS Trust or the drug manufacturers.

There are numerous successful legal precedents now. You can not only sue for money lost, but also debts outstanding, and if you have been forced to retire by 'the DA effect' you can sue for all the future income (with interest and reasonable future pay rises) which you WOULD have earned had you stayed working to normal retirement. Plus pension contributions you WOULD have made.

Finally your claim would include all interest, legal fees and a serious sum for mental torment, broken homes, everybody's stress, etc.

If a patient has been suffering OCDs for several years, and has lost their home and family, a typical claim would be for several million UK pounds.

An initial option to get the hounds off your back is to get an affadavit signed by a couple of top private PD professors explaining how the drug made you not responsible for your actions, and unable to tell right from wrong. Then send copies of this (recorded post) to creditors along with copies of press cuttings etc showing other successful legal cases, and a letter from you or a solicitor explaining why in law the NHS/manufacturers, NOT you, are responsible for these debts.

You then immediately cease all further payments to them. Warn them that they will lose any legal action against you, and merely incur massive legal costs for themselves. Finally tell them that if they continue to hassle you, you'll be demanding the return of all the payments you've made to them so far, and that you'll add a yet-to-be-determined sum for stress.

DO NOT BE AFRAID, YOU ARE IN THE RIGHT.

Ray.
I have had a long phone call with a solicitor at Leigh Day in London. They are mounting a class action against the manufacturers of some DAs but they are only including gamblers.
The damage from hypersexuality is far harder to prove as you have to show increasing losses as the dose of medication increases.
It is evidently extremely hard to prove and there are no successful cases in Britain although plenty in America.
I also approached a firm in Cardiff but they refused on the same grounds.

Contact details for Leigh Day and co---tel:02076501200
e-mail:[email protected]
They said they would look at suing the neurologist but we are loathe to do so as they all know each other and we are afraid future treatment will be affected.
Good luck to those who take the makers on!
I don't believe you got much chance of bringing a successful lawsuit against the drug manufacturers in this country. Firstly there is a 3 years time limit for you to make the claim. That's within 3 years of you knowing about the issue, so anyone pre 2008 forget it! Secondly Leigh Day & Co have been dipping their toes in and out of the water on considering legal action since i first approached them way back in 2005. I'm not sure where they are with this "class action" case, but its been floating around for at least a couple of years? Then their is the issue of costs, you wont get legal aid? Unless you have lots of money or some form of personal insurance cover that will underwrite the costs, they wont touch you. As someone who went bankrupt due to gambling, i did not have either.

Assuming for one moment the people in this class action case fulfil all the above criteria? Will the case ever get to see the inside of a UK court, no chance! If the drug company got a wiff of it actually going to trial, they would settle out of court and gag any claimants. This would then stop others being able to use a successful court case as a benchmark to any future claims. Last but not least unlike the USA, in this country any successful claim would only be for your gambling losses and a percentage of legal costs for both sides. In the USA you also can claim for damages, such as loss of future earnings etc.

So their you are, good luck to anyone who is considering legal action. The law in country only favours the rich and of course premier league footballers who like to issue super injunctions.

regards
bluey
Hi,
Been thinking very deeply about things with my impending Neurologist appointment.Mulling things round in preparation for the usual questions and exam,i have got to admit to feeling a little apprehensive.
At times i think the Mirapexin is not having the same effect.I am currently on 0.7(1mg)tablets 3 x Daily.The way these tablet increases work is a bit confusing with this drug.Anyway,i don,t really want to increase so soon and contrary to belief i do understand that OCD is a threat,which i believe i am in control of at this time.I read the latest postings on here and have done a few things out of character lately myself which i woulden,t normally do.I am aware of a compulsive pull.I put bets on most days,which has turned back into every day,like i used to do years ago.That is not strange really,but the length of time studying form,systems etc on the computer and watching recordings of the races i have backed has.In fact computer time in general has like someone has already mentioned on this thread.
I find my Wife complaining that i am at the bookies too often.Now,i have had some good bets in lately at low outlay,certainly not losing.It is so tempting to put more on to win more.We certainly are not rolling in money.You can get over confident.On occassions i have put a little more on(within means)then regret it.Thinking ,hold back don,t get carried away.The warnings and awareness ringing in my ears.I feel i am in control and have the will power to pull away if i think i am getting carried away.
Only in this last year have i used my card to book or pay over the internet etc,this is not like me.It has been with family present,not secretive,neither the gambling,but i must admit to having to rein myself in at times.My argument has always has been that with awareness people on DA,s like myself can control,adjust or come off them when noticing changes.Not that they don,t exist,but statistics are very misleading.Only catastrophic figures should be included.
Those opposing my views on awareness and self control may think i may be in the grip of the manifestations of OCD.If so,am i noticing and also am i going to tell the Neurologist of certain things that concern me,but have not been serious.In other words i am aware of them.Or do i say nothing,because if i stopped the DA,s i would turn into a shambling Robot.
I am also breaking another Golden rule.I have to attend the appointment on my own,my Wife could not get time off.I think she may have a few things to say,if asked certain questions.I can understand how pwp going to an appointment can sit there and say "Oh yes,i,m fine",it is the easiest thing to do.How do you explain to your Neurologist that you are noticing certain changes,but know they are there,keeping them in check,without them taking you off them and going on to Levadopa drugs etc,which i want to avoid.I have to consider this as i am always totally honest.
A good heart to heart with my Wife and what she would say is my objective this evening.
In control but heeding warnings and keeping an open mind as to the way forward.
This may be a surprising posting
Thanks for listening
All the best
Titan
In the UK, criminal law overrides civil law in that it it requires proof beyond all reasonable doubt, whereas civil law only requires proof within the bounds of probability.

In my own case I have already been tried for 6 counts of fraud under criminal law, and let off - the Crown Court accepting scientific testimony that whilst I was under the influence of Cabergoline I was unable to tell right from wrong or good from bad, as this DA would have completely taken over my mind.

As such I should have a pretty good case to follow through in the civil court, i.e. if I chose to sue the neurologist.

BUT then you hit the same brick wall: sizable funds required by the legal brethren up front, before they can start. Funds no longer available due to the DA. Full circle!
Thank you titan for puting into words the concern I was trying to express. I do not feel so quite alone. My plan is to put it all down on paper & give it to the neuro & sit & shake & wait until she reads it
Hi Titan.

The only points I'd like to add to all my previous waffling is that I've been lucky enough (?) to have experienced all 3 states:

1. At the very beginning, on a low DA dose and nowt else, I experienced no OCDs, but I DID get the benefits of the Cabergoline. These were VERY significant.

2. Later the DA dose was increased. The GOOD effects of the DA remained (mobility was still first class, etc), but in swept the OCDs - utterly destroying me for many a long year.

3. Finally the DAs were removed, and I was put solely on Sinemet. The drop in quality of life was seriously major, and still is. No OCDs though. :stuck_out_tongue:

I know it's temping to cling on to the vastly improved physical quality of life that usually comes with the DAs, but don't try to kid yourself you can keep dipping your toe in the water. Believe me the undercurrent is too strong.

Oh how I long to be able to RUN down the road again, like I could on Cabergoline. But there's absolutely no way I'll ever touch DAs again. The horrors were impossible to describe - truly frightening.

Ray.
hi titan

I read your posting with great interest. Sometimes you can move from being OCD (but still in control) and into the grips of more serious OCD over a long period of time. In some ways this can be worse than being pushed straight into the grips of pathological OCD, by a neuro prescribing high dosages. Because in moving slowly towards "the line" and then crossing it, everything seems normal and you feel in control.

One way you can test yourself to see where you are in relation to "the line" is as follows; Create a situation that involves you not going to the bookies or betting on line for at least 4 or 5 days. Maybe take your wife on a short break or visit some friends. Then ask yourself and others how did you behave during this period of not gambling! Did it make you edgy or tense? Did your wife think you were restless and not interested in anything? Did you try and sneak off to have a quick bet or rush off to the bookies as soon as you returned from the break?

all the best
bluey
Hi
Thanks for the replies.I was quite expecting,suffer and use willpower.Well i suppose the explanation given by you Blueeyes47 hits home as rather relevant.I suppose you could say that i am standing in front of the line looking beyond,thinking i am fine but what if,what if the dose is increased at consultation on Friday.
I will be openly honest and really cannot believe these words are coming out of my mouth/fingers.The take a break with your Wife example i did on our anniversary 4 weeks ago.Here goes!!.Yes i put bets on for both days of the weekend before leaving,yes ,i was edgy not knowing the results.I knew i could watch them on the computer when i got home.When i got home an emergency cropped up and it was frustrating not to get the results until very late at night.
I reckon though that i could go all week and not put a bet on,but how it would effect me,who knows.Even when on holiday well before my pd diagnosis and DA,S,i would put the odd race on.So maybe i have always had mildly compulsive tendancies,but where that leaves me now i don,t know.
I reckon i am in control but you say the line to be crossed can be very vague.Will have to have some serious thinking,your line comparison is excellent.
Will be searching my soul,maybe there is no black and white in the argument but rather a large area of grey.
All the best and many thanks
Titan
hi titan

I for one totally respect your openness and honesty, and do not intent to try and score points from you being honest. If you want my opinion for what its worth, i think your slowly getting closer to that line! From the description of how you felt on your recent break away with your wife, you are starting to show a unhealthy relationship to gambling. By no means have you crossed the line because the fact you are questioning your actions shows your still in control. However i am not sure it would be wise to increase your DA dosage at this stage. If you feel your meds need upping because your PD is getting worse, have you considered asking your neuro to use a combination of DA's and sinemet?

all the best
bluey
Dearest Titan
You are being very honest in admitting your fears.
You seem to be at a stage where you can stop the gradual take-over of your thoughts and control by the strength of the OCDs.
Maybe you could print out your forum post and let the neuro read it ?
Perhaps a slightly lower dose would mean your awareness would remain sufficient to let you stay on the right side of the line?
My husband began to take an interest in pornography 3 years before he became overwhelmed with OCDs and the lying and deviousness that accompanied it.But he kept it a secret because he knew we would be angry and alarmed. He says he always felt that what he was doing was fine, that he was clever and invincible, even as life spiralled out of control.
If those of us who fell into his pit can do anything to help you so that you don't experience the final horror of a life in ruins, tell us and we will move heaven and earth to give you our support.
x
well, I seemed to have got lost somewhere in the mix
Hi titan,

Ask yourself these questions?

Since introducing a dopamine agonist...

Do you spend lengthy periods of the day and possibly night on the internet?

What is your activity on the internet i.e what sites are you visiting frequently?

Are you sleeping ok or is the internet your buddy for the night?

How many hours a day on average do you sleep?

Do you binge during the night on junk food?

Do you find it hard to turn the computer off, does it make you feel irritable?

Are you able to lead a constructive day?

Do you find yourself wriggling in the chair because you need the toilet and keep putting it off because you can't pull yourself away from the computer?
Titan, I too appreciate your honesty regarding this issue and agree with others that you really do need to beware of any increase in the meds. My spending became out of control so gradually, I wasn't even aware of it. At that time OCD was not a generally known fact and I had received no warnings, therefore when my neuro asked me if I had any other concerns at the end of each appointment I would just think that he meant constipation, stiffness ect. It was only when my husband on one occasion jokingly said 'if you could stop her spending Doctor that would be great'.
My neuro put his pen down, leaned over to us and said 'Tell me more', we realized then that he had been aware that OCD could be a problem and had not mentioned it to us before.

Like others I am unable to afford to take my neuro to Court, so am left wondering just how long I can hold onto my home and the stress of it all just makes the old parkies worse.


Thanks Ray for the advice regarding an affidavit signed by two top neurologists, can you e mail me with that information? I know that you have previously given it to me, but I appear to have lost it.

If i can be of any help to anybody that has some concerns regarding their DA intake, please let me know.As others have stated before me, I wouldn't want anybody else to go through what we have, if it can be stopped early by heeding the warnings.

regards
Glenchass
Glenchass: PM sent.

Ray.