I have been in touch with a producer of Mr Bates v The Post Office. This programme succeeded in forcing the British Government to pardon all those innocent postmasters falsely accused of theft.
The producer has been investigating Dopamine Agonists and Impulse Control Disorder since 2022 and would very much like to speak to anyone in the UK who has been affected, with a view to making a UK TV dramatisation.
Research studies show that up to 38% of patients taking dopamine agonists are affected by ICD, and rates are probably much higher because doctors and patients do not make the link between out of character gambling/spending/sexual behaviour and dopamine agonists. Also, many patients are too ashamed to mention it, even though the drugs have caused this behaviour.
So, if you have been affected by impulse spending ( making out of character purchases of items you would not ordinarily buy), gambling, over eating, or hypersexuality and are willing to tslk about it to this TV producer, please do send me your info and email by private message. I will pass your details/email address to the producer.
If a drama is made about this, we stand a chance of improving awareness among doctors of how widespread this serious side effect really is.
We have had members on here who have lost homes, marriages, careers and money because of ICD. One GP simply told one patient to join Gamblers Anonymous.
Enough! It's time to fight back against the ignorance and negligence.
We may even succeed in getting dopaminergic drugs relegated to 'end of life' situations and better training and treatment of RLS.
I really hope many of you will get in touch.
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Joolsg
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The producer is already in talks with the City Law firm that has brought hundreds of cases against big Pharma and UK doctors and neurologists.At the moment, the producer wants to talk to patients in the UK only.
Hi Joolsg, you are indeed a wondrous Woman. I would be willing to take part but my side affects were relatively minor which is, I believe, why the other company didn’t find it interesting during the zoom meeting I had with them. But I will send it through to you if you can explain how on earth I do private posts. 🤣
Great Work, if they want to hear from Oregon, USA, I am available!
I hate pharmaceuticals and I hold a grudge. I wish I never heard of Pramexapoli, mirapex and ropinerole. Augmentation was hell on earth, I mean why would anyone warn me of going cold turkey! Grrrrh.
I am going for a walk. Good luck finding volunteers!
Thanks so much. For now, the producer is concentrating on UK patients affected by impulse Control Disorder.But, if it gets made, it may lead to docu dramas in other countries.
I was horrified to read recently in the notrs to the American Sleep Academy new draft guidelines that since 2018, 70% of new RLS patients have been prescribed dopamine agonists in the USA.
That figure will be similar here in the UK.
A whole new generation condemned to augmentation and ICD.
That would be amazing to get that made and on the tv. Hope you get enough people come forward Is there a way i can get this to the fb groups the big one must have a few from the UK who have experience it.
Yes, please do. You can copy the link and post it on FB, or ask anyone who has developed impulse buying, gambling, hypersexuality and who would be willing to talk about it, to send you a message and you can forward it to me via chat on here.
Interesting point. In the UK, lawyers have to stay up to date with the latest laws, case law and precedent. It doesn't seem to be the case for doctors. Otherwise, neurologists would know about ICD and Augmentation.
Jules, you are exceptional! I hope you and they will pull it off
Good drama, by the way, the Mr Bates vs the Post Office. I thoroughly enjoyed the drama, but was horrified by the story. Here in NL we had something similar with allowances for child care.
Not early days. Your ability to get in touch with the right people and get them to respond and even interested I find stunning. You must have a way with words and striking the right cord.
With an intro from Jools, I have been in touch with the producers today. I’m certain I suffered from ICD during my 12 years on ropinirole, and Leigh Day solicitors think I may have a case given what can only be described as compulsive spending during that time.
It’s definitely embarrassing to admit to such behaviour, but I feel so strongly that we need to expose the drug companies for what they’ve put us through, that I’m putting those feelings of shame to one side.
Jools is right - it’s time to take off our gloves and fight!
Thank you so much. It's the drug, not you. Big Pharma have paid out billions in class actions. They knew about this in the 1990s! But the medical profession need to teach RLS and the very, very common side effects of augmentation AND ICD. As they have refused, legal action & a documentary will have to force them to learn.
This is fantastic news and opportunity. I live in Western Australia and can relate to ICD after being on dopamine agonist medication for many years. I really hope this investigation and program goes ahead. Please let the producer know that this is a world wide issue. Kind regards Julie McGowan.
No it isn't. These producers achieved justice for thousands of wrongly convicted postmasters in the UK.They made an excellent, factual, well researched docu drama.
The legal cases are completely separate and are necessary to force the UK medical Profession to teach RLS. Litigation here in the UK is not as easy as in the USA.
There have been successful actions against big Pharma for failure to warn about ICD, because big Pharma knew in the 90s that it was an enormous problem.
This programme will hopefully signal the alarm about dopamine agonists which are STILL first line treatment here.
So I'm confident the producer will raise awareness of the scale of ICD and the complete lack of teaching and training in the UK.
RLS-UK backed a campaign in 2020 to get RLS included on the teaching curriculum. The medical professional body here refused point blank.
The producer contacted the legal firm to try to find anyone affected by ICD who's willing to talk about it to help others realise the drugs are causing the ICD. No other reason. I suspect most cases were settled out of court and Non disclosure agreements were signed.Hey ho.
I've read it. Yes it's worrying that these case reports keep appearing and the writers seem completely unaware that all anti depressants and anti psychotics trigger/worsen RLS.Here in the UK, neurologists still prescribe Amitriptyline for 'nerve pain' to settle RLS.
That's why something has to give.
The medical profession refuse to learn the basics of RLS.
There is no mention anywhere in the report of this patient using antidepressants. On the second page - not posted by DesertOasis, it says that the man reported delayed improvement of his symptoms accompanied by a considerable reduction (halving) of his (opioid) medicines. Also, his depressive symptoms improved markedly. We'd better not make unsupported assumptions.
There are quite a few more papers about TMS for RLS. There are two recent (2023-2024) reviews by Lanza et al, unfortunately the full papers are only available through an institution or by paying. I tried to attach the pdfs as a picture, but that didn't work. They conclude that the TMS led to reduced symptoms lasting for up to several weeks, but that the type of TMS protocol to be used still need work.
I remember well on around 2013 when Ropinirole had stopped working and my old MS neurologist prescribed Amitriptyline. I didn't sleep all night and knew immediately the Amitriptyline had worsened it. He said, 'oh yes, that can happen, but rarely.' We know that is untrue.But the majority of neurologists here and in the USA just won't read any research on RLS. Doctors here tell off patients for consulting 'Dr Google' and Help forums.
It really is time for it to end. I came off Ropinirole in 2016, 8 years ago.
And neurologists are still refusing iron infusions or low dose opioids.
I firmly believe that things will change and that we will all be able to say
Hi Jules , so wow I got prescribed Buprenorphine ! Sublingual tablet 0.4 mgs . Night 1 wasnt great for first 3 hrs but paperwork said normal . Night 2 , maybe 5 mins of rls in night . Didnt get a great deal of sleep but prob had more than I thought .Im weaning Gabapentin very slowly . Not sure when to take Bupren, have been taking it about 1.5 hrs before bed . No nausea at all so looking good . Dr said I could go up to 0.6mg if needed but next size seems to be 2mgs so bit confused .Hope you are ok ?Thank you again for all your help
I'm so pleased for you. I take 0.2mg at 9pm and 0.2mg at midnight. That's because I started to get RLS around 8pm after the first week, so I worked out that I could extend the cover by taking it in 2 doses. Buprenorphine in Europe comes in 0.2mg pills. In the USA, the smallest pill is 2mg. Average dose is 1 to 1.5mg. Stay on the lowest dose that gives you 24 hour cover.
Opioid wakefulness can happen, but a small dose of gabapentin can counter that.
So after 3 weeks on 0.4 sublingual Buprenorphine prescribed by neurologist my Gp will not prescribe as drug not listed for Rls . Phoned neurologist to see if he will carry on prescribing but I guess its going to be a hassle . Have also contacted a Gp practice near by to see about moving and if they will issue it to me . With 8 tabs left Im in a right old panic
healthunlocked.com/rlsuk/po... this recent post. Call GP surgerirs within an hour's travel & ask if you csn register. Explain that a neurologist has prescribed Buprenorphine, which has stopped your refractory RLS, but you need the prescription to continue.
That could also help many other neurological diseases. Very interesting. However, as we can't even get iron infusions here when patients are severely anaemic, TMS will be very far down the list of treatments. Unless the patient can afford to pay for private treatment.I've been taking Lion's Mane for around 7 months to regrow/stimulate neural pathways for my MS.
There are many alternative & standard treatments out there that should be tried before meds.
Joolsg can you tell me what brand and where you buy the Lions Mane, please. I'm in the US. I'm on Gabapentin and have been on it since 2013. Having memory, balance and dropping things issues. I'm wanting off the Gabapentin and I'm in the process of this with my Neurologist. You are a God send!
You might want to try switching to pregabalin. Although it is basically the same drug except you don't need to divide the doses, and the side effects are basically the same, some people find that the side effects that bother them on one don't bother them on the other. Divide the gabapentin amount by 6 to get the correct dose.
If you don't try this and you continue to come off the gabapentin you need to do so very slowly to avoid withdrawal effects. Reduce by 100 - 200 mg every 2 weeks. If you do so you will have no withdrawal effects.
All power, Jools! I went through the usual hideous struggles with Ropinerole, but was free of ICD. But all of us who spend time or have spent time on the RLS/PLMD front line and have researched our condition are dynamically aware of the deeper horrors attendant on dopamine agonists and the obduracy of the medical profession. May those out there who use this wonderful resource and who have suffered from the extremities of a brutal treatment regime fed by wilful ignorance flood your inbox with their narratives! We await your news…
Interesting! When I was diagnosed with RLS the initial treatment proposed was Ropinirole. I declined this due to the potential for ICD. Ferritin was also low and is currently monitored regularly and maintained >100. Thankfully I have remained off Ropinirole or similar but now have little assistance from the team who identified RLS.Eccleston
There are treatments available. Raising serum ferritin above 200ųg/L is the first step. Safely replacing all trigger medications ( anti depressants, anti histamines, statins, beta blockers, PPI meds) is the second.Then gabapentinoids can be tried. Visit the RLSUK website, where it's all set out.
Fabulous. Jools, , all the very best with it. The fact that I have never taken dopamine agonists for my appalling RLS is ONLY thanks to this forum. Hope this gets made, the word spreads and we finally all get proper help. Pigs may fly 🐷 🪽 ….. But hope springs eternal 🤞🏿
Not sure as I'm on a new MS medication that 'resets' the immune system. So I am feeling that my walking is a little better but no idea if that is the Cladribine or Lion's mane.
No luck so far 🙁. Only those in the USA have said it happened to them. But got good response hoping it will get made. I am bumping it up every few hrs so people will see it.
Great work again Jools! Your dedication, or stubbornness😃is admirable! I certainly suffered ICD when on a dopamine agonists. I would be willing to share my experiences but live in the US. If something changes and they want to expanded a bit, please let us know. Keep up the great work! Thank you
Dear Joolsg - Congratulations - your perseverance has paid off. I am delighted for you. I do hope you will be able to get enough UK citizens willing to tell their story.
It would be wonderful if this producer would also take into account the horrific stories from people who have had to get off DAs. I think that is where the very real suffering is found with many contemplating suicide. However, this is a wonderful chance to get something concrete up and running for proper teaching at medical school level.
All of us who have suffered for a life-time can see that our quality of life has been very much poorer than our friends and family who do not have RLS. My late husband and I stopped going to the cinema or theatre decades ago so it affected his life also.
Anyhow I pray that this project will take off big-time towards helping present and future sufferers to have a better life.
Thanks Jelbea,I did discuss the current tsunami of augmentation and the hell of withdrawal, but the TV producer needs to have 'shock factor' to get the public onside. And if that happens, the medical profession will have to 'wake up' and start to study the common side effects. So it will indirectly benefit all others suffering augmentation.
Good work Jools! It would be fantastic to have a docu-drama made on this subject.
Well done Jules I def suffered with Icd on the DA's from an eating point of view. I would eat anything I could get my hands on . In a hotel once I ate a whole packet of mints because thats all I had . My neurologist despite me being concerned about augmentation just put my dose up even higher so withdrawing was pure hell .Most Gp's are totally clueless . GOOD LUCK !
I do hope something happens. Most Doctors refuse to listen and a TV programme may force the medical profession to learn about RLS, dopamine agonists, augmentation and ICD.
I have emailed the producer, I have issues with food. Had to fight for an iron infusion and opiates. I now have a new GP who listens and an excellent pharmacist. I also shamed my local neurologist with my knowledge. Shouldn't be.
Thank you so much.There are innocent people in prison because ICD has totally messed with their brains & caused impulsive spending/gambling funded by out of character theft.
Big Pharma have known about it since the 1990s and when sued in 2009, covered themselves by putting warnings on med leaflets.
So, sadly, to stop doctors prescribing any more dopamine agonists, this AND legal action is the ONLY option left.
Thank you so so so so much Joolsg. Your stubborn streak is a beautiful trait.
🤞. Hopefully people will find the courage to come forward.
This can only be a good thing for sufferers. I don’t pity the medical professionals who are supposed to have a duty of care. If enough of them had the integrity to do due diligence we wouldn’t have to bare our souls on tv to enact change.
I luckily found this forum in time to be knowledgeable enough to point bank refuse treatment with DA’s.
Once again thank you for fighting the good fight on behalf of us all, those who went before us and for those who aren’t yet afflicted. We appreciate you immensely.
🙂 I was actually referring to the first line of your response to Jools.
"Great work! Send him the names of doctors and hospitals who are known prescribers."
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Medscape article on RLS
The most common failures in relation to the treatment of RLS, from my experience:
