In an earlier posting on this thread, I made some observations relating to Hypersexuality and an individual who had behaved inappropriately to a member of the public and involving the police. My remarks met with some criticism from “Goldengirl” and agreed by “Reah”. I have hesitated from re-entering the fray for fear of saying anything which may be considered Politically Incorrect. Having reflected on the subject for some time, I am no longer able to contain myself and feel obliged express my views again. I should mention that I have had PD since 2011 and included amongst my medications is a D.A. (Ropinirole). I have personally always enjoyed a healthy sexual appetite which is something I had to give thought to when agreeing to take Ropinirole. After careful consideration and discussion with my wife I formed the view that whilst Ropinirole may increase my sexual interest, it would not and could not make me pursue any action which is alien to my nature. I have no medical background but I hold that view very strongly and cannot be dissuaded from it. Rightly or wrongly we tend to judge others by the principles we follow ourselves.
It would seem from the remarks of “Goldengirl” that those of us who take Dopamine Agonists should not be criticised for any antisocial behaviour. If that were the case, it is like having a license to do whatever we wish and, there are no doubt some individuals about who would choose to do so. Should my comments be viewed as extreme and politically incorrect, may I offer the excuse that my judgement may be impaired because I am on Dopamine Agonists or, does that only apply to Sexual and Gambling offenders. Gerrard
I appreciate that you have your own personal views on this in light of your own experience with Ropinirole. As I’m sure you’re aware, this is a very sensitive topic for all those that have either experienced compulsive and impulsive behaviour as side affect to their Parkinson’s medication or have witnessed the distressing affects it has had on friends and/or loved ones. Whilst I’m not taking sides, I’d also like to reassure you that my agreement was in reference to contacting the members’ GP or Parkinson’s nurse.
However, as Bettyblue stated , this has already been passed onto the safeguarding team here at Parkinson’s UK and I trust that this particular situation will be addressed by them.
Gerrard,
I am pleased that you have never experienced the life-changing side effects of DAs.
The latest French research shows that about 50% of people on a therapeurptic dose will experience catastrophic Impulse control disorders in time…
You seem to think that thus behaviour is just about expressing increased sexual interest in a somewhat anti-social manner, and then blaming the drug.
If only!
There is a thread about ICDs/ impulse control disorders and DAs…going back years.
Do read through as much as you can bear to hear the stories of the many, many PWP who have suffered ruined lives, bankruptcy, broken marriages and relationships because of these side effects.
Thank your lucky stars you have experienced none of this…the illegal activities, the secrecy, the lies and deception that bring ever-increasing thrills into the lives of good people who would never have imagined that they would sink into this pit of depravity.
I have been there as a carer and received wonderful support from sufferers in the old forum.
I still support some victims who find their way to me via the historic threads.
The outside world judges but people with Parkinson’s in particular need to support each other and that means learning about and understanding the horrendous situation that can befall some and not dismissing them as just needing to control themselves.
Again, if only…
GG
Betty blue
I realise the conversation is uncomfortable for you but I feel it is important to promote understanding of this dreadful problem.
There is a clear need for information for some PWP and their carers if some think that it is possible to control the impulse control disorders that can be experienced .
Research makes clear the high numbers who are affected and the severity of the side effects.
If we let people carry on thinking it is a problem which they will never experience or can control we are not helping them.
If it is indeed possible for you to delete the conversation…so be it…but I was unaware that you could delete any posts but your own.
I hope you can see my contributions as trying to warn and protect potential sufferers and explain the need for help for those already in the grip of the nightmare.
GG
I wonder if you saw Inside Out on BBC1 at 8pm tonight?
There was a long piece about Ropinirole and the impulse control disorders that many suffer as a side effect.
It was a little sanitised but made clear the overwhelming of the normal personality as the obsessions took over.
Worth watching on iplayer to be forewarned?
GG
My husband has Parkinsons and takes m/r mirapexin.He has had lots of problems with impulse control especially hypersexuality.We have been happily married for 40 years but I came close to leaving him for my own protection. Our Gp and PD nurse helped reduce his dose of mirapexin as his consultant was dismissive of the problem.
I am writing this to explain that this is not inherent to a person;s nature but is a devastating side effect of medication and for any of you that are experiencing these problems or seeing them in a loved one then be brave and seek help.
Our situation is much improved but it wasn’t easy being brave enough to talk about these things and then persisting about it.
I wish you all well
Thanks for sharing your story with us, @maisiecat. I’m sure it will help many others who may feel embarrassed or uncomfortable to talk about this issue. Wishing you and your husband all the best.
Dearest Maisiecat,
My heart goes out to you and your husband .How on earth can a consultant be unaware of these devastating side effects which affect 50% of patients taking a therapeutic dose of DAs?
The drug companies have blood on their hands.
Love and hugs
GG
Some of you may know me here and I thought of coming here under cover of a new avatar but I believe this may help more if it is just me. I have found that I have been affected by impulse control issues in eating, spending , use of the internet, hobbies and hypersexuality. when I started on ropinirole( I am not sure exactly when). I was warned about the potential issues and I went into it with my eyes open. I was married and my wife was fully aware of potential issues. I had no problems. A couple of years later my marriage broke up not from any issue connected to impulses.
However what I did have was complacency I went through a bad time lost my confidence and didn’t expect to have any impulse control issues but I did there were signs of increased internet usage and I became involved with no strings sex. Six months down the line my main problem was compulsive internet use at night. My previous poor sleep was a godsend compared to my new situation. It got worse until I could have lost my job. That was all I needed to accept I had a problem. I managed to control both behaviours but didn’t realise at the time sometimes I compulsively spent and ate. I met a new girlfriend my compulsions actually went dormant and for 18 months I was a bit compulsive about food. and writing but no aspects threatened my life. After we split but not straight away my behaviours escalated. Spending pushed my finances my weight gained, seeking sex made me less connected to my family, loss of sleep pushed me to the limits. I admitted my problems to no-one and thought I could control my behaviours. Every time I brought something under control another crept up on me. Two years ago the mainstay of my Parkinsons meds was 14mg of ropinirole. I was under huge pressure at work due to sleep problems and daytime tiredness caused by the ropinirole. I decided to change my meds but getting appointments and going through the different steps took time. A year after my meds only included 6mg ropinirole and in the past 12 months I have lost 2 stones, my spending has been controlled I settled my sleeping pattern, My year at work has been a success. My sexual behaviour is under my control and I am not seeking it. I wrote this to show you how complex these issues are. They may strike at any time , you dismiss their negative impacts on your life, you don’t tell the truth you protect your ability to continue them. I still take 6mg per day but I cannot take for granted that they will never affect me again. So I watch all the aspects and check my own decisions. Please I ask everyone don’t assume anyone else either shares your story or can cope like you. Some of us will have much harder issues to deal with and will not be able to control it. Some of us might be able to act to institute some control but everyones story is different and we may require different levels of support. It may seem to some that maybe my problems were not necessarily related to the drugs. I can assure you though they made a huge difference and without the side effects my behaviour would have been markedly different.
Thank you Jon B for your honesty.
It is so hard to convince people of the nature of the compulsions…how the victim lies to himself and doesn’t accept that their mind has been taken over.
I am so glad that your life is returning to normal and that your story will give hope to others.
Love
GG
Thank you,
It is hard for people to appreciate but we are dealing with drugs that act on the brain and sometimes there are side effects. Like any side effect we can address it by changing the medication. There is always hope.
Thank you for your honestry and being brave enough to tell your story.I am glad things are better but you are right to stay vigilant as even on a small dose on mirapexin my husband;s compulsions vary.I think the madopar also feeds into it at times.
I think once you have recognised the problem that you are much more in control and I think those of us that have these stories should try and share them as for a long time my husband didn;t think he had a problem.This was undoubtedly made worse but his consultant implying that there was something wrong with me if I didn’t meet his sexual demands.
I think the compulsive eating is alomst the easiest trigger to watch because of weight gain and that keeps you alert.
Wishing you all the best
Maisiecat
Thank you.
I am at a slight loss to understand how your consultant could make such a basic mistake. Although I saw complacent and naive attitudes from medical professionals but nothing as wrong as you faced.
Thank you also for sharing here
Thank you,Golden Girl,we are getting there but I don’t think we will ever truly recover from the damage done.I posted because I know from my experience that the PWP normalises their impulse control issues and as a partner one is fearful of letting them down. However I think you have to harness your internal warrior and fight to be heard.
Our consultant,well thats another issue isn’t it. I think sometimes the big Pharma companies are too close to the NHS and that the reporting system needs to be opened up for patients to self report serious side effects
Best wishes x
People just don’t understand what Parkinson’s drugs do to us,just try and put things behind you and really try and keep your thoughts and feelings to yourself,I know it might be hard but in the long run it’s,it will keep you out of trouble I used to be the same,the PD nurse said it was the Pipexus doing it so she seemed me off of them and now I’m fine,no hyper anything,just calmer,bye.
In a previous posting, I made some remarks which I have come to realise were ill-judged and regrettable. On reflection and, irrespective of the views I hold, I accept that my comments were insensitive. I was not aware that the subject of Compulsive Behaviour is such a complex and sensitive issue with ramifications much wider than I realised. I take Dopamine Agonists myself and did know, of course, that they carry a warning of Compulsive Behaviour but I never imagined that a medication I am taking myself could be responsible for the damaging addictive behaviour with which they are attributed. I had not seen or read the numerous sad personal stories which have since been brought to my attention. I have been particularly moved by recent postings on this forum and the article on Compulsive Behaviour featured in the current issue of “The Parkinson”. It has become apparent to me that much – if not most - of the distress associated with Compulsive Behaviour is borne by those who care for and live with relatives who have been prescribed D.A’s. With hindsight, I deeply regret my comments and apologise to anyone to whom I may have caused offence. In an attempt to atone for my indiscretion, I have made an additional donation of £200.00 to Parkinsons UK. Gerrard
Dearest Gerrard,
You have nothing to apologise for.
Consultant neurologists, GPS, many PWP have no knowledge of these devastating side effects.
PDUK had done very little to publicise the problem although it has been known about for the last 10 years. Latest research in France shows 50% of patients will suffer devastating impulse control disorders in time, as doses increase.
The drug companies involved deliberately keep us in the dark to hang on to their massive profits.
Those of us who have got caught up in this nightmare try to support each other and get the message out there to prevent more people falling into this pit.
You have been shocked at the reality of the side effects and are now less likely to suffer…you will hopefully now have family or friends watching out for signs of ICDs.
Maybe you will warn other Parkinsons patients.
That is what we damaged families want.
Stay well.
Love
GG
Hello,I too say that,I was on 0052mg Pramipexole and Safinamide,then in November 18 my PD doctor saw me and said "I’m putting you on something that will help you greatly,then he gave me a prescription for Co-beneldopar,after I took the first on my life fell apart,I was not the person who I thought I was,like Jekyl and Hyde,I was very very over sexed up,I was on the phone changing the online banking details,my wife went berserk when she tried to get online to do some money transfering,it wouldn’t let her in to the account,my marriage was in turmoil,all because of the co-beneldopar an expert in Parkinson’s Disease gave me,thank f–k he took me off of them,now I don’t take any Parkinson’s meds or anything,he’s taken me off of them all for 3 months to see how I am without them,bye.
