Just out curiosity has anyone had to come off Dopamine Agonists because of the side effects from Impulse Disorder? Or had them mildly and carried on trying not to do it? This is a subject I have never seen posted on this forum and I wonder how widespread it is. People may be too embarrassed to own up to them and it is impossible to write anonymously. Or I think it is. Could the moderator suggest a way? I did have one of them some years ago when on Ropinerole. It has gone now but I would like to have talked to someone else with the same problem at the time.
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Ruffabug
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This has happened to a several people on the forum and is a known side effect of dopamine agonists. Enter Impulse control in the search box and you will see others who had it.
ICD is EXTREMELY common. There have been hundreds of legal cases against UK doctors for failure to warn about the very high risk of ICD. People have lost homes, marriages, careers and lots of money.There is a printable page on the RLS-UK website.
The producer of Mr BatesV The Post Office has asked for patients affected by ICD to contact her. If you are happy to talk to her, send me a message. She wants to make a docudrama about it.
Just click on my profile and you'll see my posts about this.
We also need all patients to report this via the Yellow Card Scheme. Doctors will remain ignorant unless every patient reports this side effect.
Welcome to the forum. You will find lots of help, support and understanding here.
SSRI's make RLS worse for most people. If you are taking it for depression, Wellbutrin or trazodone are safe. If you are taking it for anxiety buspar is safe and trazodone can hekp.
You don't want to be on pramipexole, It is a dopamine agonist and almost everyone on it will eventually suffer from augmentation and it can be hell to come off it and the longer you are on it, the harder it will be to come off it and the more likely your dopamine receptors will be damaged so that the now first line treatment for RLS gabapentin or pregabalin won't work nor might iron and it has been found that suffering from augmentation can lead to painful RLS which you don't want. I strongly advise you get off it while you haven't been on it for very long.
First off check if you are on the slow release pramipexole. The slow release ones usually have ER or XL after their name. If so you need to switch to the regular pramipexole because the slow releases ones can't be cut.
To come off pramipexole reduce by half of a .088 [.125] tablet) (ask for a prescription of these if needed) every 2 weeks or so. You will have increased symptoms. You may need to reduce more slowly or with a smaller amount or you may be able to reduce more quickly. Wait until the increased symptoms from each reduction has settled before going to the next one. You will suffer and may need a low dose opioid temporarily to help out with the symptoms especially as you near the end. Some have used kratom or cannabis temporarily to help. But in the long run, you will be glad you came off it.
Dopamine agonists like ropinirole and pramipexole and the Neupro patch (Rotigotine)are no longer the first line treatment for RLS. Gabapentin or pregabalin are. (Pregabalin is more expensive than gabapentin in the US.) The beginning dose is usually 300 mg gabapentin (75 mg pregabalin) [If you are over 65 and susceptible to falls beginning dose is 100 mg (50 mg pregabalin.)] Start it 3 weeks before you are off pramipexole although it won't be fully effective until you are off it for several weeks. After that increase it by 100 mg (25 mg pregabalin) every couple of days until you find the dose that works for you. Take it 1-2 hours before bedtime as the peak plasma level is 2 hours. If you need more than 600 mg take the extra 4 hours before bedtime as it is not as well absorbed above 600 mg. If you need more than 1200 mg, take the extra 6 hours before bedtime. (You don't need to split the doses with pregabalin) Most of the side effects will disappear after a few weeks and the few that don't will usually lessen. Those that remain are usually worth it for the elimination of the RLS symptoms.
If you take magnesium even in a multivitamin or magnesium-rich foods, take it at least 3 hours before or after taking gabapentin (it is OK with pregabalin) as it will interfere with the absorption of gabapentin and if you take calcium don't take it nor calcium-rich foods within 2 hours for the same reason (not sure about pregabalin). According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin (200 to 300 mg pregabalin)."
Have you had your ferritin checked? If so what was it? This is the first thing that should be done for RLS. Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. If not ask your doctor for a full iron panel. Stop taking any iron supplements including in a multivitamin 48 hours before the test, don't eat a heavy meat meal the night before and fast after midnight. Have your test in the morning before 9 am if possible. When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. If your ferritin is less than 100 or your transferrin saturation is less than 20% ask for an iron infusion to quickly bring it up as this will help your withdrawal. If you can't get an infusion, let us know and we can advise you further.
Check out the Mayo Clinic Updated Algorithm on RLS which will tell you everything you want to know including about its treatment and refer your doctor to it if needed as many doctors do not know much about RLS or are not up-to-date on it as yours obviously isn't or s/he would never have prescribed a dopamine agonist at Https://mayoclinicproceedings.org/a...
Some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, artificial sweeteners, carbs, foods high in sodium, foods that cause inflammation, foods high in glutamate, ice cream, eating late at night, oestrogen (estrogen) including HRT, dehydration, electrolyte imbalance, melatonin, Monosodium Glutamate (MSG), collagen supplements, eating late at night, stress and vigorous exercise.
Some things that help some people include caffeine, moderate exercise, weighted blankets, compression socks, elastic bandages, masturbation, magnesium glycinate, fennell, low oxalate diet, a low-inflammatory diet, selenium, 5 minute shower alternating 20 seconds cold water with 10 seconds hot water finishing with hot water for another couple of minutes, hot baths, distractions, applying a topical magnesium lotion or spray, doing a magnesium salts soak (epsom salts), vitamins B1, B3, B6, B12, D3, K2, if deficient, and potassium and copper if deficient, massage including using a massage gun, vibration devices like therapulse, using a standing desk, playing and listening to music, creative hobbies, meditation and yoga.
Many medicines and OTC supplements can make RLS worse. If you are taking any I may be able to provide a safe alternative.
In a recent survey of over 3000 RLS sufferers conducted by RLS-UK, 11% said they were experiencing some form of impulse control disorder.
You are right that not many people post about ICD, possibly because they don’t identify it as such, but it does get regular mentions as a side effect of dopamine agonists. Thank you for raising the issue as I’m sure there will be people out there who are affected but don’t realise.
There is some useful information about ICD in the one page guide you can download here. Scroll down half way.
Hi Ruffabug, yes, I have had to and am in the process at the moment of ditching Ropinirole precisely because of impulse control issues. Funny thing is that I have been on 4mg per day of slow release Ropinirole for 10 years and it really only became a major issue in the last year. I don’t know if any longitudinal studies have been done to establish if the likelihood of ICD increases over time. Anyway, that’s my story.
When I was on Ropinirole many years ago I augmented after two years. As I slowly came off of it, I realized how different I felt and my impulse to shop reduced. I didn’t realize while on it that my impulses were caused by the medication. When I went to Vegas once while on it I just kept going to the cash machine. The more I did it the worse I felt about myself. Prior and after the ropinirole I would walk in with an amount I was willing to loose and when gone I walked away. I felt like myself again. I am lucky I wasn’t close to a casino at the time!
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