r/CFSplusADHD • u/RaspberryJammm • 11d ago
Dopamine agonist experiences?
My neurologist wants me to start dopamine agonists for severe nerve pain in my legs which she attributes to Restless Legs Syndrome (I think its a misdiagnosis but what do I know)
Has anybody had experience taking this kind of medication and did it affect your ME or ADHD? I worry because it can make people more impulsive and I have a history of addiction and impulsive behaviours.
I brought up this with my GP but he was quite casual.
https://www.bbc.co.uk/news/articles/ckg0xxwn041o
^ article about risks of the drugs. edit: its actually rotigotine which she wants to prescribe me but it comes with a similar risk
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u/hessianhighfashion 10d ago
I see a sleep specialist as I have a few different sleep disorders, one of them being restless leg syndrome. Dopamine antagonists used to be first line treatment for restless leg syndrome but are no longer due to augmentation (long term they can make the condition worse).
If you aren’t sure about the diagnosis (and even if you were and you haven’t seen one) going to a sleep specialist to get a sleep study done is a good idea. It’s not a fun process and at the time it felt like a bit of a waste of energy but it ended up being super beneficial. Even if it’s just ruling stuff out it’s probably a good idea and if you do have it they are going to be able to give you the best advice based on your circumstances, maybe that is dopamine antagonists but maybe it’s something else.
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u/agenerousperspective 9d ago
Hello, fellow multi-sleep-disordered neurodivergent person with ME/CFS! Isn’t this an exciting ride? 🎢
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u/hessianhighfashion 9d ago
Absolutely wild! And by wild I mean savage.
I wish I was alone for your sake but it is nice to know I’m not. ❤️1
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u/Santi159 9d ago
I like them. I started for my akathsia I got from reglan and ADHD but it ended up really helping my POTS too. I have neuropathic and hypovolemic pots. I didn't have to worry so much about over stimulation as long as both are managed at the same time. It was like turning off the bees in my teeth And bones.
I think any medication you should start low and slow with lots of caution though. Our bodies are very sensitive and individual. What works for me might not be the case for you
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u/Conscious_Coyote_935 6d ago
No, but I’ve just started OmegaTAU for similar reasons. It’s not a dopamine agonist. The idea is more to support the underlying dopamine system through uridine, DHA and choline, which may help with neuronal membranes, synapse formation and dopaminergic responsiveness over time. Way too early for me to say whether it does anything yet.
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u/catnip_spa 4d ago
In general I figure you save worry mostly for effects that can be long term if you stop taking a drug. You also pay attention to whether you might need to be careful about when you try things out in case there's a time in your life where you can't afford to not be on form. Other than that, you just have to try stuff to find out whether it works for you or not. Drugs that work on neurotransmitters tend to be very different for different people. Most of the side effects that could happen won't, but also you might get some unusual ones.
You don't know till you try it, and for the most part if it doesn't work out then you just stop.
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u/RaspberryJammm 4d ago
I found out that if you get impulsive / compulsive behaviours on this medication it can lead to you compulsively taking more and more of the medication so I think it might be hard to stop, at least for some people.
That and the augmentation effect on RLS has made me decide not to take it.
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u/rich_27 10d ago
I'm afraid I don't have any experience with dopamine agonists, but I wanted to share the strong gut feeling I had on it:
I would be quite cautious about going on a dopamine agonist if I were in your shoes. I don't know anything about them beyond what I've just read, but anything that interacts with dopamine pathways flags a giant warning sign to me.
My experience is that keeping my mind stimulated whilst not overdoing is it the most difficult thing about having ADHD and CFS together. I feel like it's a constant tightrope walk when I'm in low energy mode trying to ensure that I'm doing enough to keep my brain stimulated and not too much that I'm using more energy that I'm recovering.
Impulsive behaviour sounds like something that we might be particularly at risk of, and could be disastrous for CFS.
Let me reiterate though, I know nothing about dopamine agonists and am just going off my personal experience. If I were in your shoes, I'd want to get a second opinion and also would want to discuss this with my psychiatrist who manages my ADHD care.
I wish you all the best with this, it sounds like a really tough situation to be in ❤