Dopamine Agonists/Impulse Control Disorder - real advancements afoot in blowing up the scandal

[Snoops112233]

Hi everyone. I haven’t posted for some time as I was going through both my mum and dad being poorly and losing them in the space of 18 months. However, some of you may know that I was successful in my case for Impulse Control Disorder as a result of being prescribed TWO Dopamine Agonists (firstly Pramipexole and then Ropinirole) when the GP knew I already had a propensity to gamble after the first DA was prescribed. I had developed augmentation over a period of months of Pramipexole, so went back to GP, who said ‘there is another one I can put you on at the same time’ and they added Ropinirole - which is the devil of DA’s. Anyway, things turned to a horrific situation (as a lot of you will know), and I gambled an awful lot of money. Initially I was just sports betting, but when COVID happened, and the sport stopped, I was compelled to go to online casinos, and that is when it got awful. I nearly lost my family, and my life. Some four and five years later, having been successful with my case, I am willing and happy to help anyone else going through this horrendous situation. I know what it is like only too well. I came off them - I went cold turkey - but that I would not recommend. So through this forum and my solicitor I have been contacted by a number of people who are trying to blow the story up - and give it the coverage that the injustice of these tablets and us victims deserve. So if you are going through it at the moment - hang in there please, things have to change. Firstly I will be talking on Woman’s Hour on BBCR4 next Tuesday morning about this subject, I want to speak on behalf of the sufferers, of those people ‘stuck’, of those people that just don’t see a way out, that have lost money, family, jobs, reputation etc. Five years ago, in a million years no one would have thought I would have come through it - I would like to give you all hope, love and kindness. Sue

[Joolsg]

Excellent news Snoops.There have been several newspaper articles on this over the last few months.

The BBC are also doing a news article on BBC South about this and an online article in the next week via Noel Titheradge.

There will also be a Netflix drama documentary by Mr Bates v The Post Office producer in the next year.

I recently put up a post about Yellow Card Scheme. Only 22 people have reported augmentation and ICD on the MHRA database for ALL dopamine agonists over the last 5 years. So 4 people a year.

We have to keep reporting augmentation and ICD.

Doctors keep prescribing these drugs because there are NO REPORTS of SIDE EFFECTS.

If you have been affected by Augmentation or ICD please, please, please file a Yellow Card Report.

bnf.nice.org.uk/medicines-g...

[Snoops112233 in reply to Joolsg]

Hi there, I will report it, I am doing Woman's Hour via Noel, and also in contact with the Mr Bates team. The more we get this out there the better.

[Joolsg in reply to Snoops112233]

Agreed.This has to end.

So many lives ruined & the medical profession carry on in ignorance.

Well done you for speaking out.

[Dotmowatee in reply to Joolsg]

Reported.

[Chocolatelover1211 in reply to Joolsg]

I am in the US and reported it to the FDA (US Food and Drug Administration) MedWatch which is the voluntary reporting program here in the US for adverse effects. Literature available here in the US has ICD as a side effect but it’s not included in the pharmacy information packet which is included with the medication for every drug prescribed here in the US.

[Joolsg in reply to Chocolatelover1211]

Fascinating. If it's not included in the meds leaflet then presumably you can take legal action against the drug manufacturer?After the Class actions against big pharma in the USA- all meds packets here in the UK include warnings about augmentation AND ICD.

We therefore cannot sue manufacturer but we can sue the doctors if they failed to warn us.

[Chocolatelover1211 in reply to Joolsg]

I had no idea. I will definitely look into this. Thank you!!

[Joolsg in reply to Chocolatelover1211]

If I were you- I'd take the packet to a firm of lawyers & see whether you can bring legal action against the manufacturer.Here in the UK there have been several cases recently against doctors and the RLS patients have received back all the money they gambled AND damages on top.

[Chocolatelover1211 in reply to Joolsg]

I will definitely look into it. It was actually shopping on Amazon. I was able to return most of the items so my family member got most of their money back.

[Chocolatelover1211 in reply to Joolsg]

Just to be clear, I suffered both augmentation and ICD (uncontrolled spending). I am now on Gabapentin for about 3 months and am free of RLS. I take 800mg 2 hours before bed.

[Madlegs1]

Well done.

Fair play to you for managing to get off those poisons.

And for fighting your case.

A great example for the rest of people who may find themselves in a similar situation.

👍💚☘️

[Snoops112233 in reply to Madlegs1]

Thank you, if I can give hope to anyone...x

[Joolsg]

A reminder to file a report via Yellow Card Scheme if you have experienced ICD (gambling, spending, overeating, hypersexuality) on dopamine agonists.

Doctors are still prescribing these drugs because no one is reporting ICD or augmentation.

So apparently, ICD and augmentation are extremely RARE.

We know this is not true.

So FILE a report and tell everyone you know to do the same.

bnf.nice.org.uk/medicines-g...

[lamujer]

So sorry about your bereavement Snoops, it’s tough losing both parents and so close together

But you’re a strong fighter to get through all you have been through and to be letting others know how dangerous these DA’s are, well done and I will listen out for the programme on Woman’s Hour xx

[Snoops112233]

thank you so much, that's really kind words and means a lot x

[Kaarina Administrator]

Dear Snoops,

I am very sorry to hear of your loss. It is such a shock to lose one parent but to lose both of your parents in under two years is unbearable and heartbreaking for you and those close to you.

Thank you so much for offering to talk on Woman's Hour next Tuesday on behalf of other sufferers that have been through/going through similar when prescribed DAs. You went through hell and back due to negligence of your doctor. You really are one special, courageous lady and we at RLS-UK are most grateful that you feel strong and determined enough to give voice to the suffering you went through for others. A huge number of people from all walks of life tune into Woman's Hour so your message will be heard by many. Power to you Snoops. 💛💛💪💪

[Snoops112233]

Hi Kaarina, you have no idea how much your words mean, if I have been through the hell I have with the DA's to help other people, then you know what - maybe it was all for a reason. Let's stand together on this, if you or anyone else would like me to try and incorporate your experience into conversation please let me know. Loves x

[Kaarina Administrator in reply to Snoops112233]

Thank you, Snoops. 💚💜💛💙{{{hugs}}} 🌻🌻

[TimeEnd]

My ex had Parkinson’s, was on Sinemet for several years. He suddenly divorced me, despite his evident illness and his age (in his 70s). After he filed for divorce, he told me he felt he was on a runaway train but didn’t know how to get off it. He regretted the filing, but was too weak to stop the process. “What would people think?” After he moved out, he would call me occasionally, and then finally, several months later, asked me to marry him again. It was too late. I strongly think the impulse to divorce me was due to Sinemet and ICD. We had had no serious marital problems, and it was lonely for him living alone, dealing with his illness alone. My heart still breaks concerning this.