Parkinson’s affects everyone differently and the drugs used to manage the condition can cause different side affects for people as well. Therefore, it is not guaranteed that people with Parkinson’s will experience ICD, however, we have information on this via our website about this potential sided affect and of course, the forum is also here for people to share their experiences as well. Our helpline advisers have extensive knowledge on ICD and anyone affected by Parkinson’s can contact them for information and support. If you’d like to speak one of our advisers, please give us a call on 0808 800 0303 or email them at [email protected].
hi every one i had a real bad time on requip i think it was called all the gambling and the rest of it any one suffering the same i would be ok to talk to anyone about what happend to me i was jeckel and hyde didnt relise it went on for 2 years prefer to talk one to one im in liverpool so text me if you wanted a chat how you feeling or anything ive had pd since was 35 now 53
My partner is serving a prison sentence for what sound like a similar reason.
He was diagnosed in 2016 after about 10-12 years or so of symptoms which went undiagnosed.
He was given Madopar by the consultant, a fairly low dose. A month later he went to his doctor and the prescription given was wrong - she had doubled the dose in error. His behaviour changed but only slightly (my family noticed it, but I didn’t) but 8 months into the over medication, he commited the crime for which he is in prison for. Prior to the Parkinsons medication being prescribed you could not find a kinder and lovelier person, hard working, had a good career. The police investigation could find no evidence to suggest this was a life long tendency. However having been advised by his barrister that he would not receive a custodial sentence he was told to plead guilty because the offences had taken place. The barrister obtained some medical evidence to provide to the court, but it wasn’t enough and coupled with the pre sentence report done by an ill qualified probation officer who said basically he was using the drugs as an excuse. He was sent to prison for 5 1/2 years.
His symptoms are slowly getting worse and he is anxious that by the time he is released they will have got even worse. He is unable to follow the diet & exercise regime which we followed before he went to prison. During lockdown he has been restricted to a short walk and not allowed to use the gym. Fortunately he was lucky to be able to continue his work in the prison gardens, otherwise I am sure his mental health would have been terrible. I haven’t seen him since the end of a February.
My family would never want anyone to go through anything like this. A kind, decent man has been dealt the worst possible hand, he doesn’t deserve any of this. The judiciary, and the NHS have let him done s very badly. We tried to appeal but the judge stuck to the original reasons, did not really acknowledge that this mans personality had been altered completely by the medicine that was meant to make him better. He has one year left to serve before he is released on licence. Then I will try to fight to clear his name and get some form of justice.
I’m truly sorry to hear about your father’s experience with impulsive behaviour and how this affected you and your family. This thread alone will let you know how impulsive and compulsive behaviours (as a side effect to Parkinson’s related medication) has affected multiple members on this forum and you are certainly not alone on this. I’m sure you’ll receive some supportive messages from the community soon, however, in the interim we have a lot of information on impulsive and compulsive behaviour on the Parkinson’s UK website which may be helpful to you. You can find this info here: https://www.parkinsons.org.uk/information-and-support/impulsive-and-compulsive-behaviours-parkinsons
My husband has had PD for 10 years and ICD for who knows how long. He won’t let me attend appointments with his nurse or consultant, so plays down the impact of his behaviours, which are reported as being manageable in the follow up letters.
Our family has contacted and emailed his nurse and consultant about the devastating effects of his behaviours on him and ourselves, and eventually they did admit him as an in patient for 5 days in February and reduced his ropinirole (Dopamine agonist) and sastravi doses. He has now stopped taking ropinirole but things are as bad as ever. He drives off for hours on end, frequently needing to be rescued as he can’t drive back. He’s continued to visit sex workers during lock down, despite needing to self isolate. He’s totally distraught by his actions and wants them to stop. He’s talked about suicide because he can’t see how to take back control. Every time I contact his medics they phone him and he denies that it is an issue. He is frightened that the medics will remove all his treatments and that he will be left totally incapacitated.
The drugs are responsible for this level of distress and anxiety. He feels he has lost our respect and love. We can’t help him overcome this and his medical team accept his assurances that everything is okay. He is on a waiting list for a duodopa pump/DBS assessment. Does anyone know if this is a better form of drug delivery which might alleviate his side effects?
I’m truly sorry to hear about the distress your husband is currently going through and what has occurred as a result of his condition declining, I’m sure this must be really tough for you and your family to witness.
In light of the information you’ve shared, it sounds like your husband has struggled to find the right medication to help manage his condition especially as it has progressively gotten worse over time. Therefore, I’d strongly advise that you contact our confidential helpline and speak to one of our trained advisers about this so they can provide you with information on the duodopa pump. They have incredibly knowledge on all Parkinson’s related medication and will be able to offer you a lot of help and support on this. Please give us a call on 0808 800 0303 Monday-Friday: 9am-7pm, Saturday: 10am-2pm (Closed Sundays/bank holidays).
Given that you haven’t received any advice from any of our members as yet, you may want to take a look at someother threads on the duodopa pump to gain some idea of what other people’s experience has been with it. Also, It sounds like your husband may be experiencing impulsive and compulsive behaviour as a side effect to the medication he was taking which may have led to hypersexuality which, unfortunately, isn’t uncommon among people with Parkinson’s.
I have listed a few threads below which has information about the duodopa pump and impulsive and compulsive behaviours from members of the community who have had experience with both:
Hello. I am sorry for the delay replying. I have been away. I am so deeply sorry to hear about your experience. It sounds so familiar. The judge said my father should be sentenced to 15 years but as he acknowledged that the medication had an impact on my fathers behaviour, he gave him a reduced sentence of 8 years. This was a very conflicting message. Surely if the judge acknowledged the impact of the medication then he would understand that he shouldn’t be sentenced at all!! There seems to be no defence in law for medication induced ICDs.
Please tell me how you intend to clear his name? I too am keen to expose this. It’s such a cruel path that they have had to take.
Hello. I am so sorry to hear about your horrific experience. My father was commenced on Duodopa which gave him his mobility back (And it was like having our dad back!) however, it was at this point that his eyes were opened to the catastrophic thoughts and behaviours. He promptly went to the police station and confessed everything. They had no choice but to take action. 18 months of court cases and a decision was finally made to sentence him to 8 years. The outcome was shocking and devastating. So I’m sorry that my story does not bring hope. However, Duodopa did give him more independence For a few years and took away the ICDs. However he has noted recently that the ICD side effects are creeping back in again. The symptoms and the titration of the Duodopa are not well managed while he is in prison so It is difficult to support him from afar. We are now just waiting for him to come home next year.
Requip is a bad one, you have to watch £30,000 I spent with this and kept telling specialist I was having trouble shopping online wouldn’t listen to me I had to get my doctor to write to him twice then we got a specialist nurse, then I changed specialist and he changed my medication.
I was diagnosed over over 3 years ago with young onset, probably had it 10 years. I’ve still not taken any of the meds prescribed to me, ICD is one of the main reasons.
There have been dozens of cases in the last year of people with Parkinson’s being dragged before the courts, there was one featured in the Mail Online last week. The courts show no understanding whatsoever of the effect of Parkinsons meds and how they affect people. It’s down to Parkinsons UK to start educating the Judiciary.
As a relatively young man with Parkinsons, I have no intention whatsoever of taking the meds!
Although it is entirely our decision regarding your medication, I would encourage you to speak to your GP or Parkinson’s nurse about this as well. Everyone with Parkinson’s responds to the medication differently and we’d hate for your Parkinson’s symptoms to worsen as result of you not taking medication.
In regards to the work Parkinson’s UK are doing to educate people about the condition, we raise awareness, change perceptions and work in partnership to drive better services in a number of ways. For more information the work we do in terms of campaigning and policy changing, please visit our website here: https://www.parkinsons.org.uk/about-us/our-vision-mission-and-values
I rarely visit the forum these days…my husband is dying and we look back on our ruined lives…ruined not by Parkinsons but by dopamine agonists.
PDUK has known for over 10 years that at least 50% of patients on these drugs suffer terrible OCDs and their consequences, You have not lifted a finger to help us, to educate the judiciary, to provide legal help for those who go to prison. Other countries have fought the drug company, GSK and won millions in compensation…not the UK.
Married for 56 years, wanting to die for the last 15 .
Pat yourself on the back PDUK.
and no, I do not want the, ‘ Sorry you are sad, would you like phone counselling…?’ reply.
We begged for help. Others are begging you now. You turn your back. Why?
While we know this is an issue and we have done some work on this, we can appreciate your anger.
We have been doing work on this, but maybe not communicating it as widely as we could have. Also our focus has been on our community and the clinical guidelines rather than the judiciary or pharma companies.
I didn’t see that you had replied to my post from July till this weekend. Our stories seem very similar, but not unusual according to Parkinsons UK. From the word go they told me that it was a common problem caused by all types of Parkinsons meds. However, like your father my partner was told by the judge that it would ordinarily be a 15 year sentence but reduced to 5 years or so. He will serve 2 years & 7 months for taking a medicine to make him better.
He was honestly was let down by everyone, the new consultant was adamant it was the drugs but the NHS would not assist her to prove that the drugs had caused this catastrophic change in his personality.
He was assessed by the probation officer, who after one meeting deemed him to be using the meds as an excuse. At the time the crime was committed he had no idea the meds had caused this and was so deeply ashamed he tried to hide it all ( something the judge deemed to be a sign of guilt, not a side effect of these dreadful drugs). So our regrettable stories are very similar.
We have no idea what he will be able to do upon his release next year. But I am determined to try to clear his name, just not sure how. Finding more people with similar problems and getting the law to change would be a start.
My partner is now almost up to the same level of the meds. that he was when he committed the crime. He had been over prescribed by the GP. in error. Parkinsons UK specialist nurse confirmed that he was taking the dose that a person would be on after being on the drugs for some time, the mistake was made after one month, and the consultant was unaware of the increase. After all that we found another consultant who had been recommended. During his sentence The consultant has been able to monitor his response a bit, she always had said that with his response being under her control she could keep an eye on him but obviously being in prison makes it difficult.
Hope your father is ok and that you will soon have him home to rebuild his life.
I’ve read your replies to the many comments regarding impulse control issues and you repeatedly only mention Dopamine Agonists. Your own helpline ( ie Parkinsons UK) informed me that ALL Parkinsons meds can cause these unwelcome side effects). Oh yes like goldengirl I totally agree that Parkinsons UK do not do anything to help people who are so cruelly treated with a prison sentence which is totally inappropriate, no actual solid help. I spoke to several specialist nurses who all said the same thing, that it was the medication. All these empty promises of help have ruined my mans life. No support whatsoever with the legal side. I remember asking if they could recommend a lawyer to help, to no avail. All the stuff that has changed regarding the various written advice is no good, because as it was so eloquently stated by Onestar
In another message, the person with Parkinsons will not understand like a normal person because their brains are being fed different messages via the drugs. The handling of my partners situation has been totally outrageous and something positive has to be done for these victims. He will have this hanging over him for the rest of his life. It’s dreadful, let alone what I’ve had to endure as a person who totally supports him, because I truly know what caused him to do what he did. I am judged so wrongly, because the people concerned have been given no concrete evidence. They just assume that he blames the drugs! He, like me, had no idea what could happen after taking these meds. Trust me if we had, he would never have taken them.
It’s absolutely awful what you and your husband have had to endure, my thoughts go out to you both.
We’ve spoken with goldengirl and we’re looking at some of the suggestions she made about things we could do differently as an organisation. This may take time but we’re committed to supporting our community.
With regard to your comment about our helpline service, I know you feel that we as a charity have neglected to help people in situations that have arisen after taking these medications, but we must clarify that it is the responsibility of the health professional prescribing dopamine agonists to give information about the potential risks/side effects so patients can make informed decisions about whether they wish to take them or not.
We suggest you also speak to the health professionals involved and/or make a complaint if you haven’t done so already? You’re obviously welcome to contact the helpline again so we can offer guidance and signposting on how you can do this, if you wish.
Hi. I have not long joined forum and have an interest in these matters, done a lot of reading and research about addiction, medications, Parkinson’s, because it happened to me a few years ago, I lost every penny I had due to the side effects of medication. Was lucky to survive such devastation and to have deep support from people close to me. There is so much that needs to change about how professionals deal with this issue. It beggars belief patients are still being held accountable and going to jail - my god - for something that robbed them of the mental capacity to make appropriate decisions, that wasn’t their fault and which they were not equipped to handle. Why the persistent rhetoric that “only a small percentage of people experience these problems “. The best study to date was not long ago and showed that 53% of patients on these drugs over a 5 year period experienced some form of impulse control disorder. Meaning people were MORE LIKELY THAN NOT to have a problem over 5 years - so logic tells you how massive this could be over longer time periods- we need drugs for life. I was on sinamet. Class action or case against medics - has anyone?
PD UK you do a lot so well, but lacking on this, I do agree with other comments.
Anna
I forgot to mention- GAMBAN is an app that prevents you being able to gamble on your mobile device. Extremely effective. Should be a prerequisite to prescription of these ICD- inducing drugs. Might not stop people gambling completely in other ways but stops the amount of financial loss occurring literally at your fingertips. Could be a life saver.
Anna
I totally agree nobody told me about the side affects, and I got in terrible dept and I kept telling my consultant, my doctor and Got no help at all people should be held accountable for give you these drugs and not informing you about what can happen, I was on 16mg of reqiup xl and kept getting things in my head I had to do and couldn’t stop it not realising it was the drug and when I did it was to late I was in serious trouble and I don’t mean just by the dept.
This is what a specialist wrote in a letter to my doctor back in 2016 after 4 years on ropinirole. Dopamine withdrawal syndrome is a real phenomenon we are seeing more and more and stopping the ropinirole or similar drugs is hard to do and patients tolerate it poorly. Particularly those who have treatment responsive tremor.
