Pat

As a child I can remember crying because of pains in my legs, I used to get into bed with my mum so that she could rub my legs for me, I was about 8 or 9 years old. I was always told that it was growing pains and I would grow out of it.

Over the years my legs would ‘play up’ as I called it, but it wasn’t too bad just a nuisance. My sister also suffered with the same thing, so we thought it was just a ‘family thing’ that we just had to put up with, nobody else seemed to have it at that time.

I often went to the doctors to see if he could give me something for my ‘fidgety’ legs, I would occasionally get some sleeping tablets to take but never a reason why my legs were like this. My sister’s was also getting worse. Sometime over the following years my legs seemed to be getting worse while my sister’s remained the same (hers is still about the same today). I probably suffered for years until I got so desperate I looked online for an explanation why they were like this and discovered ‘Restless Legs Syndrome’.

In September 2009 I went to my doctors armed with information on RLS, he had heard of it but didn’t have much knowledge of it. He told me that he had a couple of other ladies suffering with something similar and that they were on a drug called Ropinirole and were very pleased with how well it was helping with RLS and their sleeping. He did not advise me of the many side effects of the drug, like Ropinirole being a Dopamine Agonist which can cause Augmentation and possibly a gambling addiction. I also now know that there have been many Class Action lawsuits in the US regarding DA’s but he must have been oblivious to this. The only advice I ever got from my doctor when I went to see him regarding my gambling, and that was on many occasions, was for me to attend Gamblers Anonymous. Again, he never advised me that the tablets and my gambling were connected in any way even though I told him I had never gambled in my life before taking them. Obviously if I were made aware of these horrendous side effects I would never have taken a DA. So I took them not knowing what devastation they were about to have on my body.

I was ecstatic for the next few years taking Ropinirole as it was helping my legs and I was sleeping well, then I noticed I was having to take my tablets a bit earlier as my legs started playing up again. My doctor upped my dose saying that I should be okay now. He was right, I was okay for a while but now my legs were playing up from about 5 o’clock in the afternoon, then they would start during the day. Suddenly I couldn’t go to the cinema or theatre in the afternoon or evening or even to sit down for any length of time because it was torture for me. My friends and family got used to me standing up watching the television or constantly prancing around the room.

I started looking online again and I found a forum for RLS called HealthUnlocked. 

It was a eureka moment, all these people suffering the same problem as me. It was then that I discovered Augmentation. I went back to my doctor again armed with all this information on augmentation I had printed out for him to read. Even though I was suffering really badly with my RLS the thought of weaning myself off this drug sounded horrendous, almost worse than what I was already going through. Along with suffering augmentation I also had this urge to gamble, where did this come from! I had never gambled in my life, no lottery tickets, never had a bet on the National Horse race, nothing, I had never had any addictive habits, and here I was with it constantly on my mind. I started going to the local casino to feed the constant pressure that was telling me I had to gamble.

Back to the doctors again, during this period I was seeing my doctor about 28 times a year, I could see by his face when I went to see him thinking ‘what am I going to do with this woman now’.

In 2019 I gradually stopped taking Ropinirole, it took me 7-8 months, the worst time of my life, again I wasn’t monitored properly throughout this time, I was just left to get on with it. I survived because of the wonderful people on the RLS forum, giving me advice and reassurances that they had done it, and I would get through it. If it hadn’t been for these knowledgeable people, I do wonder what would have happened to me, I was in a very bad way. They were my saviour, the only true people who knew what I was going through because they too had suffered the same lack of knowledge and support from their doctors as I had done.

Throughout this time, I saw three different neurologists. I regret to say the first two I saw were not helpful at all. At one of my visits, it was clear that the neurologist did not know what to do with me or what to prescribe. While I was sitting there, he had to phone a colleague to ask him what advice he could give me - he did not have a clue. 

The third neurologist seemed to know a bit more about RLS and I was diagnosed with severe Dopamine Dysregulation Syndrome. Ropinirole is well known for its side effects including Impulse Control Disorder (ICD), which is the term used for the addictive behaviour caused by taking a dopamine agonist (DA) like Ropinirole. At last, I had a diagnosis, someone had listened and knew what I was going through.

As soon as I was completely free of Ropinirole the gambling stopped and I haven’t been near it since. But by this time, it was too late and my marriage was in tatters. I am currently going through a divorce and my health has suffered. My memory is so bad now and I think this is caused by stress and the lack of sleep I have suffered over the years. I can’t remember the last time I last slept right through the night.

My current situation is that I am left paranoid about taking drugs, my RLS is still bad. After coming off Ropinirole my legs went back to pre-augmentation, and I mainly get RLS during the night only. I take two Codeine 30mg a night, it’s not enough but however tempted I am, I have never exceeded this dose.

(story as of May 2021)