Hi, I’m a 47-year-old man from Pennsylvania, USA who has had some distressing symptoms for years and sought a referral to neurology last year for possible tremors, right-sided stiffness, and incoordination/balance issues. I was put on a dopamine agonist, and as part of my normal research into every new health condition, drug, etc, I did a lot of searching about it and at some point found my way to this thread:
I read probably 250 posts in (skimming and ignoring some) the first time and another 50 the second, and I registered for an account here mainly to say that there is a HUGE amount of very valuable information in that thread despite the arguing and fighting that needs to be ignored. Some people asked very useful and important questions, in describing Obsessive Compulsive Disorders (OCD) / Impulse Control Disorders (ICD), others shared important (and often painful!) experiences, all in the name of helping others, new people like me, understand.
I registered here to tell you all that it helped me to understand, and to say thank you to EVERYONE who participated and put that out there for me to find years later.
I would like to share what I learned about myself in return, maybe it can help someone else understand something. I found the beginnings of an ICD / OCD in myself, and it was so simple and benign it would be completely unrecognizable as such without what I learned in that thread.
I am into cycling. I don’t have a diagnosis yet, but it’s headed in that direction and I do know that adding more exercise to my life is good idea, so I’m trying to pick up a mountain biking habit this year. I also probably have ADHD and do hobbies with a lot of gusto at the start, so it’s not weird that I picked up several cheap used bikes or ended up with a few more bikes than intended. It’s not weird that I bought and sold a couple that I had no intention of riding, it’s not weird that I’ve built and rebuilt 20ish over the last three months, and it’s not weird that there are currently 6 bikes (not all mine) between my dining room and living room (you’ll just have to trust me on that).
Still, something about all it felt off to me and I honestly asked people close to me a couple of times if they thought anything was strange. My normal friends of course all said yes but all of my bike friends thought it was pretty normal for me. I didn’t spend extra money we don’t have, it didn’t get excessive (by our standards), I wasn’t doing anything unusual like just collecting them instead of riding, etc. As a distraction while I figure out some pretty scare health concerns, it seems really positive and people encourage me to lean into it. I mostly have, but in the back of my mind, I kept thinking something was off.
I read through that thread again a week ago and the idea that ‘everyone develops an ICD / OCD, it’s just a matter of genetics/dose’ has been ringing in my head and I was glad to stop it yesterday at the doctor visit. That might have changed my attitude towards it a little, or maybe it just percolated in the back of my mind long enough, but I was talking to my wife about it afterwards, and it suddenly just clicked for me.
Do you know what IS weird? Standing there and just staring at a bike I built and admiring it for more than an hour. Sure, I’ll stand back and admire a bike I’ve built, but I’ve never done THAT before, and I did it with EVERY SINGLE BIKE, some multiple times over days, sometimes for two or more hours at a time. I stayed up later than I wanted a couple of times, especially with a new build, and I even started just planning to be up late if I was going to finish a bike in the evening.
It gets even weirder! On some level, I knew it wasn’t normal to just stand there and stare at a pretty bike, so I even had a cover story in case someone asked (“I’m thinking of rebuilding it into something else and considering options”). More than once, I moved a bike from the dining room, where someone was using the computer, to the empty living room so I could stand there and stare at it without anyone noticing.
I want to point out that on some level, I knew this was weird, and I went straight to hiding it and being ready to lie about it if anyone asked me about it. And this is all while I was seemingly extra concerned about the idea of developing an OCD / ICD and being extra vigilant and seriously considering the right area in my life. When I told my wife, my therapist, my doctor, and my friend about my bike hobby to get their take on things, I wasn’t being deceptive when I left out my new staring/admiring habit, I just didn’t think of it.
Suddenly I understand how compulsions and impulses arise in people with these drugs and are so hard to detect. I started on .5mg ropinirole at the start of August and titrated up to 3x a day. It was increased to 1mg 3x a day in October. I’m not sure when I made up my cover story, but I know I started staring at the very first bike I built at the end of September. I even remarked to my wife that it was so pretty I couldn’t stop looking at it!
I would like to call out easy it is to discuss this for me because it is all so benign. I would like to recognize anyone reading this whose thing isn’t so benign and say I don’t think it’s your fault. These drugs can make you do strange things right from the start.
I’m not sure what I’d stare at when I stop building bikes next month and move onto a new hobby and I’m not super interested in finding out so I’m stopping this drug and won’t be starting another DA.
Anyway, that is my story and I felt compelled to share it here where I found the most useful information. I’m not really participating in forums, so if anyone ever wants to copy/paste into relevant discussion threads about DAs, please do so!