Dopamine Dysregulation Syndrome

Thank you Turnip and Eck for replying to Titan in a balanced and measured way that I find I am unable to do until I calm down after reading his post.

I find the reference to “most pwp, especially partners like to bury their heads,"OH, my George would never have done that,it is so unlike him",yeah, how much don,t you really know about bashful old George?“ extremely patronising and unhelpful. Despite the fact that I would never call my husband “Dear old …..” I do not profess to know what goes on in the deepest thoughts of my OH, I think I can say that, after 28 years together, his behaviour has never caused me any concern, and I believe (before the DA’s) he was honest as one person can be with another. I’m sorry that you feel don’t feel you have that relationship with your partner. By the way my, husband didn’t do stigmas and embarrassment, he was a very confident person.

As to revealing finances, sexual preferences etc. on dx, my OH was never asked, and had no idea that it had any relevance to his diagnosis 8 years ago. Nothing, other than gambling tendencies, that we already were aware of, was mentioned.
I believe Titan, you are assuming that because those deep, dark things were within you, that it must be so with everyone else. Not a very scientific conclusion. Whatever the truth of the matter, it has now been established there is a link between DA’s and impulsive/compulsive behaviour and those pwp and their families who have suffered greatly through lack of warnings and information, should be supported not denigrated.

I don’t post very often as I don’t have a way with words but I feel it is unjust to judge other people against your own experience. I can only relate what happened to us, as a couple. I value hearing other’s experiences, which may be totally different, but not those who deny what we have gone through.

We may not all agree but please let's support each other. Titan, I hope I have not been offensive in anything I have said. I just want you to accept that although there may be similarities with people's situations there are also differences.
I have known my partner for 17 years; I've worked with him, parented with him and shared a very close relationship. He was kind, gentle, respectful of people and a very loving father. He is barely recognizable to our children and I now. Dxed 8 years ago, he has been taking the maximum dose of Mirapexin for the last four years. For three years his behavior has been inexplicable (over-spending, recklessness, cruelty and obsession with pornography), but it is carefully hidden from everyone outside the family. He has repeatedly denied having any problems when asked by his healthcare team and it has become a question of who they believe - him or me. I have provided evidence (bank statements, membership details to pornographic websites etc.) but still they won't consider changing his meds as he doesn't feel he has a problem. The thing that puzzles me is why anyone would think I would have had two children and spent so much time with someone who had behaved like this previously? What do I have to gain from him changing his medication if all was well? I have had moments when I have felt like I was the crazy one. I have become desensitised to the horrible things I constantly discover; I have had conversations that I never thought I would have with the father of my children. I hang on in because of the many happy years we have spent together, because I still catch glimpses of the lovely man I used to know, because I am very afraid of what would happen to him if he didn't have a home with us. I don't know how long we can continue like this, but can't see how to change anything.
Hi Olive,
I am so sorry for yours situation, and as you may see in my previous post, I am going through a very similar situation, so know something of what you are going through. Fortunately we do not have children at home, but as you have done, I have managed to hide what is going on from the rest of the family. This must put you under incredible strain and perhaps it is time for someone to support YOU.

Do you have a sympathetic Parkinson’s Nurse who you could talk it over with? I too drew blank with the Neuro as my husband wouldn’t accept there was anything wrong with his behaviour either, and didn’t want to reduce his meds.
If you look at previous posts in this thread others have managed to get support from a Neuropsychologist but that doesn’t seem to be available in my area, so at the moment I am trying to get some other psychological support.

Until your husband agrees to a reduction in his drugs I am not sure if anyone can insist. I had to threaten to leave my husband before he finally agreed to reduce his Requip. I realise you have children and as you say you would worry if he left the home, but I couldn’t carry on knowing what he was doing and constantly worrying he would do something illegal.

The people on this forum have been a wonderful support and I urge you to keep posting and let us know how you are getting on. My thoughts are with you. You are not alone.
Regards,
Annie
The pharmaceutical industry does not create cures, they create customers.
As per the usual, if a job needs doing, do it yourself. It seems the national obsession these days. If its not broken, don't fix it. Line of least resisitance. People who can't do their job.

This PD thing has been kicking around for a good while now. However it seems to be managed by a handful of people, such as specialist nurses, movement disorder specialists. Neuropsychologists. etc.

I was lucky enough to meet a clinical phychologist who was just starting out and still had her ears open, who said, at the last session, thanked me because she had learnt a lot about parkinson's she never new.

I have met trainee neurologist consultants who diagnosed me as having cerebral palsy.

Anyway point being, you not only have to go to your consultant, pd nurse, lawyer, etc. armed with the symptoms you need to spoon feed them the answer/solution. Its not enough to give them the symptoms and hope they diagnose Dopamine Dysregulation Syndrome. You have to tell them he has it. Tell them about the punding, the lying, the spending, the episodes of cruelty. Tell them again and again. Also I'd threaten to sue the behinds off. I'd get a lawyer and get a Power of Attorney. I'd get to every consultation.

I bet they haven't even heard of it. And, given all the evidence youv'e shown them, it doesn't seem as if they have.

The next time you call these numpties, ask them what DDS is, what are the symptoms and what to do if you suspect your man has it and how do they expect a person who has DDS to waltz into their office and fess up to all their activities when deceit, lies, cheating, etc. are symptomatic of DDS. Oh and try not to swear, they themselves eff and jeff at the weekends in the pub like the rest of us, but during office hours it offends their sensibilities and they use it as an excuse to hang up, take a break, have a lie down for a wee hour or two, and not earn their corn.

I wish my wife had done these things, however, not knowing ot the DDS side effect, just thought I had gone mad.

In the end, in a fit of remorse and all sorts of debt collectors turning up, I couldnt contain all the lies and deceit any longer. I lied to my PD nurse about buying computer games (because at that time, that was a side effect known to them), I didn't know about my wifes calls to her about my behavior, and thats what got my tablets changed.

Good luck Olive; And remember they know nothing, knowledge is power - use it to crack a few nuts, and its the squeaky wheel that gets the grease.
Oh and you will run into a few people who dismiss DDS as an excuse of weak willed people looking for an excuse for there behavior. I know its hard, but dont rise to it.

I did and nearly ended up with a thrombosis, being banned from the forum and doing a lot of huffing and puffing to the ignorant who will never believe cos their minds have closed for their lifetime.

This may also apply to your mans neuro and pd nurse. Only constant brow beating and threats to sue will have them giving up and changing your mans meds for an easy life.

Make it their line of least resistance and they will follow, they are human beings after all. They may also be taking the drug for their own nefarious purposes. I saw something similar on holby city.
Hi Annie and Olive,

Have you tried writing to your partner's Neurologist - it might open his/her eyes to the true extent of the problem.
Thank you all for your replies; it means SO much to find some support. Yes, I have written to the neurologist, GP, Parkinson's nurse et al - I have never once had a reply from any of them. I have read letters between them to each other - they mention my "concerns" but say that my husband doesn't feel that he has a problem. And that's where it stops. It is the most frustrating experience I have ever endured. Threatening lawyers sounds like a very good idea, thank you Eck. What pisses me off the most is that life with a PWP is hard enough; to have to spend so much time and energy fighting the very people who are supposed to be helping makes it SO MUCH HARDER! I often think about life without all this, it would be so easy to walk away. God knows I have been given every reason to.
Hi Cutiepie,
Thank you for your suggestion but my husband's neuro is fully aware of what has happened, and is now trying to reduce his DA's, however everytime my OH comes down to 15mg he says he isn't mobile enough and starts taking an extra mg. This is where we have been for some months and we seem to be at an impasse. No-one can force him to take less if he doesn't make the decision himself, and to be honest I can't always believe what he tells me anymore. For him it's like he's being asked to give up things that are very pleasurable and he no longer sees the lack of morality in what he's doing.
Like Olive I just don't know what to do next. I have no energy for this any more.
Hi Olive and Annie,

Yes, it is a very difficult situation. Does your partner visit forums like this one? Is he aware of the side effects these drugs can cause and how they can take over your life and have the potential to destroy it? Might I suggest printing some of the experiences others have shared, it might make him realise what he is doing isn't normal behaviour?

Speaking from experience, it wasn't until I read this forum that I realised the true extent of my addiction to the dopamine agonist and that if I didn't do something about it, I would of lost everything in my life that I value, including me!!!
Sorry, just reread my previous post. I meant to say...

print off experiences others have shared and leave them in a place your partner will find them and hopefully read them.
Another hellish day during which I have discovered the full depth of my husband's depravity. I have been wondering about the possibility of suing his healthcare providers; despite my reporting his behavior to them for nearly three years (both verbally and in writing) they have all ignored me and continued to prescribe his medication without altering it at all. The only good thing to come out of the day is that he has finally faced the possibility that he MAY have a problem (!). This he couldn't pass off as vicarious interest/dating website/lack of intimacy in the relationship. At least I now have some idea where the many thousands of pounds that have disappeared might have gone. Feeling strangely dissociated from and very exhausted by the view I am now looking at.
Suppose you were able to attend a meeting where representatives of the drug companies who manufacture DAs, the neurologists who prescribe them and the main parkinsons charities were all present.

What questions would you like to ask them?
Hi Olive,

I strongly suggest you contact the Parkinson's UK Helpline on 08088000303 and seek advice regarding the negligence of your partner's Neurologist. Have you kept copies of the letters you have sent?

The link below will take you to information supported by the Parkinson's UK about Impulsive Control Disorder caused as a side effect to Parkinson's treatment.

http://www.parkinsons.org.uk/default.aspx?page=11315

Please check your email inbox, I have sent you two Private messages. If the messages are not in your inbox, they have probably gone to your junk mail.
Good post Leyther, will be back with some questions later
Leyther that is a million dollar question! I will give it some thought. What I would like to show them is the misery my kids have suffered, watching their loving, gentle father turn into a stranger. One of my children is still very young and it has been the hardest struggle to keep her from knowing too much too soon. The first question I would ask (and will ask the local PD nurse today) is "would you leave your child alone with someone displaying this sort of behaviour?" I suspect her answer will be no! I am already researching the possibility of suing for medical negligence (and yes, Cutipie, I have kept copies of every letter I have written over the last three years). I am by profession a negotiator so am more than up for the fight. In fact, it may be the thing that keeps me going through whatever comes next. The first thing though is to try to get my OH the help he needs, and now admits to needing. I just hope his new self-awareness lasts.
I have been taking Sinemet Plus and Madapor for a long time,(Sinemet longer than Madapor). I don;t recall any unusual. side effects. An d now my PD nurse wants me to take Mrapexin too.
Olive,

Having read your posts I totally sympathise with you and can only add that I have suffered similar problems to yourself. You may have read my post requesting for help having discovered my husband's frequent use of chatrooms and prostitutes. I received a lot of support and read extremely brave confessions from PWPs which humbled me and helped me face up to what needed to be done.

He finally realised he had a problem after I chucked him out of the family home for physically attacking me. He doesn't even remember hitting me. Like yourself I knew that this person was not my husband and having read posts from PWP appreciated why he was doing this. I have three sons and have tried to protect them from this, not always successfully.

O/H is now slowly coming off of ReQuip and it is tough. Whilst doing this I have taken control of all finances and regularly have to transfer money into accounts that he cannot access. I even have to hide the prozac. We are thinking about Power of Attorney as well but are currently just trying to get through this terrible stage.

The main problem that I had was his denial of this behaviour and his ongoing deceipt, hiding the problem. Until he had acknowledged this the medical profession did not appear to accept the carer's opinion. Afterall, I have only know my husband for thirty two years. How could I possibly recognise changes in his behaviour.

If you would like to contact me privately do so. If I can help in anyway possible I will. This is a terrible disease made worse by the inadequacies of professional care and greedy drug companies.
Blue Angel, Mirapexin is a dopamine agonist and that is where the problem seems to lie for the people affected. Living with my OH for the last two years has been like living with Dr Jekyll and Mr Hyde. I am still uncovering, on a daily basis, the depths of the problem. We have visited the bank, the solicitor and the GU clinic in the last week, not my most exciting week for sure! None of this was revealed voluntarily; I have had to turn super sleuth to uncover the truth of the matter. I'm happy to say that, for now, he seems very keen to deal with his behavior and is starting to reduce the Mirapexin today. He went to his first Narcotics Anonymous meeting yesterday.

I can only talk about our own situation, and I know for sure that the man he has become since taking this drug bears very little relation to the man I have lived with for so long. It remains to be seen if stopping Mirapexin will restore him to us. I sincerely hope so. If his healthcare team had listened to my concerns the first time I mentioned them three years ago, perhaps we would never have had to go through this. All I can say is - please, please hold in mind the possible side effects and listen to your OH if they report concerns about your behavior (over and above the normal issues!).

I'm so grateful to Parkinson's UK and the people on this forum for the support I have received. It's great to know that there is somewhere to go when things get really difficult, and the advice I have been given has been invaluable. Thanks to everyone.
The following is my views on dopamine agonists and the side effects.

It is based on my experience of Mirapexin which I have taken since 2003 in various doses from 1,05mg (current dose) to 8.4mg (max dose 3.18mg) which I took for two years.

When I started on mirapexin in 2003, gambling was an issue but not hyper-sexuality. I was not warned of any personality changing affects by my neurologist until circa 2006 when I was asked at the end of my consultation did I have any unusual urges to gamble or look at porn etc. Rather like the garbled terms and conditions on car ads on the radio!

I had an increase in sexual activity from the off starting with porn and ending with dating sites. I became secretive in the extreme,a compulsive liar,very impulsive, took risks and enjoyed every minute of it. The outcome was ultimately destructive to family life.

To understand how these compulsions manifest and how the patient becomes addicted to certain patterns of behaviour you have to understand that these drugs affect receptors in the brain that manage the reward system.

In very simple terms,the reward system is required to motivate us to do anything

Food tastes good so we eat it.

Sex feels good so we do it. (the need to procreate is high on the list of all species)

I know that there are all sorts of other considerations but I hope you get the point. DA's mess with the brain chemistry of everyone who takes them. That's my understanding; everyone is affected.

However, clearly not everyone who takes DA's has a problem.

Note: the key word is problem. In the context of DA's I define problem as "a behavioural change that has a significant effect on the lifestyle of the patient"

(Lifestyle; defined as how you live your life and interact with others in it ie spouse partner,family,friends, work etc.)

There are three other key words to consider when assessing a behavioural change:

Awareness, Perception and Circumstance.

Awareness of a behavioural change has to occur.

Perception of the change and how it affects lifestyle.

Circumstance that prevail at the time the change occurs.


Consider this:

A couple are sexually active "swingers" who regularly talk online to other swingers. The wife has PD, takes DA's and is hypersexual which manifests as increased online activity when the husband is at work resulting in her falling behind with the housework. The knock on affect being the weekly shop is done at the weekend which upsets the husband.

A man with PD taking DA's discovers he has a creative urge to draw and paint. He does this every day as he no longer works. His wife is pleased that he has a hobby and accepts he does little else as he does no harm apart from disturbing her sleep when he comes to bed in the small hours.

Two separate issues both causing problems in a relationship as perceived by the person without PD but relatively minor and not considered as a DA problem.

Points to ponder:

If you had a spouse undertaking either of those activities in your relationship how would you perceive them?

Move the examples on 2 years, the swinger wife has now given up housework and the creative husband no longer comes to bed. The respective spouses are at their wits end while resentment from the perpetrators is causing a rift in both relationships.

Both couples don't realise that this is a DA issue.

This is not guaranteed to happen, circumstances may prevail that give a different outcome.

In most cases circumstances are such that any behavioural change is so minor as to not cause a problem.

My conclusions are that it is not gambling and sex or any other symptomatic activities per se that are the root cause of the problem. We may or may not have gambled before we took DA's; we may or may not have had affairs, a midlife crisis or even, obsessive compulsive disorders. We can continue for years without realising we have a problem simply because the changes are slow and become part of our lives and accepted.

The root cause of the problem is how far we are prepared to go with the activity that obsesses us however minor it may be.

Losing a job, having a house, repossessed, a relationship breaking up, not attending work because of a change in behaviour, due to DA side effects, are not uncommon.

When these activities occur whilst using DA's, we need to assess them as to their problematic status and as to the cause.

In my experience, pointers to recognising the DA being the cause are when the activity takes over your life to the point you will put it before family, work eating and personal hygiene. Also if the activity involves behaviour, especially that which contravenes previous moral standards,that you would not of contemplated beforehand.

Awareness of the potential problems due to DA's and or other drugs can prevent these problems.

This needs to be continuously monitored to be effective

To be continued