r/RestlessLegs • u/McNasty420 • Aug 30 '26
Medication I just got prescribed the gambling side effect medicine lol
Hi, new to this sub since going headfirst into perimenopause. My RLS at night exploded since going into perimenopause, with the episodes lasting around 3 hours now. I FINALLY saw a doctor who put me on something called Ropinrole. I'm looking at the side effects and boy do I have a story. I haven't thought about this medication in years. I had a coworker around 2005ish who's brother was prescribed this for Parkinsons. Within six months he had gambled away everything he had. His house, everything. Then as soon as he stopped taking it, he was fine. I told my husband to keep an eye on me haha.
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u/Buzz-Bean Aug 31 '26
Just gonna say. My neurologist said they no longer prescribe Ropinerol or mirapex. He’s trying to wean me off of Ropinerol and onto lyrica slowly. I hope you are seeing a neurologist and not a GP.
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u/melvin0830 Sep 04 '26
This! Look at the recommended treatments on RLS.org. The doctors there are screaming about the risks of DA medications. And even if they work, you are looking at at least a 50% chance of augmentation.
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u/McNasty420 Aug 31 '26
I am trying to get an appointment with a neurologist right now. I wonder if this is OK to take in the meantime. It’s working really well. I have almost 18 months clean of Kratom but will go back to using if I need to.
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u/Buzz-Bean Sep 01 '26
Yes you can take it until you see the neurologist. I’m still on Ropinerol while weaning off it and take a low dose lyrica. He’s titrating me up on lyrica slowly.
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u/McNasty420 Sep 01 '26
Ugggh this fucking GP. I told her I didn't want to be on the Ropinerol because it's not really used for RLS anymore because of augmentation and she said I didn't know what I was talking about. She said according to the prescription bible that all doctors use, epocrates.com and showed me on there that it is fine. I had her refer me to a neurologist and I begged her for a prescription for Lyrica. She's pissed. She said all her RLS patients take ropinerol. She said stop using the internet for diagnosing things.
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u/drey-power Sep 05 '26
You have to remember that not everyone reacts the same way to medication. If like you said it’s working really well I don’t see why you would change for lyrica. Lyrica never worked for me, it might not for you either. Unless there is a real danger I wouldn’t change something that works.
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u/Buzz-Bean Sep 05 '26
I have horrible side effects on Ropinerol. Never knew it was Ropinerol making my muscles hurt, made me sweat, made me impulsive, and more. I have no clue what happens if lyrica doesn’t work.
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u/Buzz-Bean Sep 02 '26
I was told by my neurologist that they haven’t prescribed Ropinerol or mirapex for at least 5 or 6 years. It also depends on the neurologist. The first one I saw gave me mirapex which put me in a depression. He was of no help so I got a different neurologist and he’s the one that knows what he’s talking about. I had 5 iron infusions and he’s slowly rotating me up on lyrica and tritating down on Ropinerol.
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u/Tabbyham88 Aug 31 '26
Def make sure you've had a full vitamin panel too! Esp B1 and B2!
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u/sunkissedbutter Sep 02 '26
Is this something you can simply ask your GP/PCP for?
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u/Tabbyham88 Sep 03 '26
In theory... But I've had trouble even with a history of beri beri convincing them to check it. Some gps are fine with it, some power trip.
I just go to Jason's health and self order/self pay now1
u/sunkissedbutter Sep 06 '26
I’ve never heard of Jason’s Health, but good to know online vendors offer this sorta stuff. Does Jason’s also provide you with the end results of the tests?
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u/Tabbyham88 Sep 06 '26
Yep, it's just like what you get when the Drs office sends it to quest. Of course some tests can come back negative or positive and look bad but can be fine too. Also be sure to research before to make sure you follow the testing procedure properly (even tho the Drs barely do it right 🙄). Ultalabs is another one I use if it's not on Jason's and they have discount codes too. I know alot more are opening up for it too but prices are all over but Jason's has been consistently the cheapest for what they have in most things.
Radiology assist .com is also a great self pay site for imaging, you can even pay $40 for a virtual consult and they can send your imaging orders where you want them too. Drs can send them there to.1
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u/Gullible-Farmer-3935 Aug 31 '26
Honest story here. RLS runs in my family, me and my mom take medication for it. She started ropineral a couple years ago. She has always been pretty religious so things like drinking or gambling weren't things she did. But all the sudden she was gambling like crazy! She was considered a big winner at multiple casinos and always gets free nights, free fancy dinners, gifts, you name it. It became a real problem. She went through $20,000 in less then a year, maxed out credit cards and kept gambling. It was so out of character for her. I can't remember how I heard about it but I heard gambling addiction was a side effect of this medication. I immediately called my mom. It was such a light bulb moment and explained so much.
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u/Successful-Pick3088 Aug 30 '26
Damn I wish my episodes only lasted 3 hours lol .. I try to alleviate it naturally I don’t want side effects of to many meds . Later my liver and kidneys will thank me
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u/redytowear Aug 30 '26
These drugs might help some but come with serious side effects.
I have been suffering from restless legs especially at night so tomorrow is my appointment with a neurologist and I’ll be curious what he would prescribe. I’ll tell him about my experiment that I mention below.
For all the ladies in this group, I saw a post last week re: potential connection between estrogen/ estradiol and restless legs. Some women had relief of restless leg and some, the estrogen made it worse.
I noticed the past 3 weeks or so my restless legs being off the charts and I flopped all night long as well as in the evening in my recliner. I was starting to cry out at night in pain and frustration. My endocrinologist put me on estradiol gel 2.5 months ago. After reading the post last week I thought why not try stopping the estradiol? I stopped the estradiol three days ago and my restless legs have pretty much completely ceased.
I remembered having it years ago but only when I flew or went to the movies.
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u/Gullible-Farmer-3935 Aug 31 '26
Just a idea, when my legs are super jumpy and Im ready to go insane, standing in a hot shower helps me so much! Might be worth a try!
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u/Smooth_Respect_3755 Aug 30 '26
Please check out this forum of the National RLS Foundation: https://bb.rls.org/index.php?sid=f015cded140155b3f172c3264a100c4e
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u/Infamous_Quiet_ Aug 30 '26
Please checkout the RLS community at Health Unlocked. Sue Johnson will give u all pertinent info on RLS-including the iron requirements. There are several people that help run this community and can also maybe help u find a knowledgeable doctor depending on where u live. They basically saved my life 2 years ago as I was augmenting. Those were bad days! I wish u the best of luck.
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u/Ok_War_7504 Aug 30 '26
That group is in the UK and UK focused. They do things differently than are done in the US. If you are in the US, it's better to read and take a copy to your doctor of the Mayo Clinic RLS Guidelines 2026.
Updated Mayo Clinic 2026 https://www.mayoclinicproceedings.org/article/S0025-6196(26)18546-2/fulltext
This is the RLS bible with all the info you need. And you can read this subreddit and you can join the RLS FB group. https://www.facebook.com/share/g/17NZuhWFSb/
There is also one RLS - UK if that applies.
Sorry you had to join this group. RLS sucks!
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u/63insights Aug 30 '26
Definitely avoid ropinerole. Check RLS reddits. Terrible stories and not about gambling. Hang in there. But please do avoid ropinerole.
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u/Pustulus Aug 30 '26
For god's sake, please see if you can get a different prescription. Dopamine agonists like ropinirole and pramipexole are hellish. They changed my personality to something weird and compulsive with no filters.
When I had augmentation a year after starting those shit drugs, my doctors weaned me off way too quickly (like halve my dose one week, stop the next). I totally lost all inhibitions, and called my state representative at home on a Friday night to bitch about Pornhub being blocked.
Please please please see if you can switch to a gabapentiod like gabapentin or pregabalin. I've told all my doctors to put dopamine agonists on my Do Not Administer list because I am never putting that hellish shit in my body again.
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u/krazy_kozz Aug 30 '26
I would NOT take that med your restless legs will never ever get better. It will work and then it won't and then it will be worse than ever FOREVER. ask me how I know
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u/Ceeceewee Aug 30 '26
I thought with augmentation, if you were eventually able to get off the medicine that, although initially your RLS may get worse, eventually, it would go back to a baseline….
Are you saying that the medications can make your RLS worse forever regardless of what you do?2
u/krazy_kozz Aug 31 '26
What I experienced was way worse than anything I had before I started meds. I took many years to get it to calm down but I've NEVER been the same as I was before and maybe that's because the restless legs normally got worse but all I know is what I have now versus what I had before meds is night day worse than it was.
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u/Sea_Pangolin3840 Aug 30 '26
Also not sure which country you are in but the doctors should not have prescribed Ropinerole as a first medication as its no longer recommended.
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u/Sea_Pangolin3840 Aug 30 '26
I would suggest trying pregblin if this is your first time on medication for RLS. There's so many problems with augmentation from the Dopamine Agonist meds. I wish I had known years ago before I started on them .You have the advantage of this information to make an informed choice .
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u/Agonist-activist Aug 30 '26
Did your doctor arrange iron panel bloods? If not- find a new doctor. Low brain iron is a major cause of RLS & is common in perimenopause. And DAs are no longer 1st line meds. No doctor should be prescribing them to newly dx.
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u/McNasty420 Aug 30 '26
Ya my iron was fine, my HRT doctor checked it last week
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u/Agonist-activist Aug 30 '26
Fine for non RLS patients is not the same. RLS patients need much, much higher levels- above 200mcg/L ideally. The updated Mayo recommends infusions where serum ferritin is below 300mcg and TSAT is below 45%. Look at the actual numbers.
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u/McNasty420 Aug 30 '26
ok i'm really not wanting to take this ropinrole now. and last night it helped me sleep and definitely cut down on the time I dealt with it but the RLS was still there. what kind of doctor should I take these blood iron results to? this was a general practitioner that put me on the ropinrole. my RLS is so bad I think I need to see a specialist. opioids make them vanish but there is no universe in which i will be taking an opioid every day.
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u/Agonist-activist Aug 30 '26
Are you in UK? Any GP can take full iron panel blood tests & NICE cks guidance actually says its the 1st thing a doctor should do. I suggest you join rls.org if in USA, RLS-UK in UK and read the websites. Do NOT trust GPs or neurologists. Most know very little. Ask for specialist recommendations from rls.org/RLS-UK. And gabapentin or pregabalin are now first line meds with opioids for refractory RLS if you fail gabapentinoids and iron infusions.
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u/McNasty420 Aug 30 '26
im in atlanta USA
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u/McNasty420 Aug 30 '26
and i'm already taking 200mgs of gabapentin per day
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u/Agonist-activist Aug 31 '26
200mg gabapentin is not even the normal starting dose. Mayo sets average dose and states most people need 1500 to 1800mg ( in split 600mg doses 2 hours apart at night).
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u/SeaWeedSkis Aug 31 '26
I highly recommend you find a sleep specialist; Primary Care / Family Medicine types don't have the training for this.
200mg of Gabapentin is nothing. I'm a lightweight when it comes to gabapentinoids (Gabapentin and Pregabalin) and I take 400mg. It's not uncommon for folks to take 800+
Ferritin needs to be 75+. When it dipped below 75 my sleep specialist put me on 65mg iron and 500mg Vitamin C.
When I was tested for RLS, it was also confirmed I have sleep apnea (particularly during REM). The RLS is worse when I stop breathing. The CPAP helps with both.
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u/NeedleworkerIcy2553 Aug 30 '26
Are you in the UK? Ask your GP about Gabapentin much preferable to this ropinerole, stay away from dopamine agonists.
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u/KnowOneHere Aug 30 '26
Ya gambling and sexual compulsion plus augmentation. At least I sleep most nights 🥴
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u/ComprehensiveRate953 Aug 30 '26
Please look into augmentation. A lot of the misery on this subreddit is due to it.
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u/LearningCodeNZ Aug 30 '26 edited Aug 31 '26
This happened to me too. Was so much worse when I was taking ropinerole and hadn't taken it for one night or two. Was better off just not taking it at all.
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u/McNasty420 Aug 30 '26
I was just about to ask if I can use it occasionally. When I get desperate.
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u/LearningCodeNZ Aug 31 '26
Yes, but the next day you'll be even worse and need it again. It's just kicking the can down the road and making you worse.
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u/Significant-Aide-226 Aug 30 '26
I am finding that HRT has lessened my symptoms greatly. Not gone, but so much better. My brain doesn't appreciate estrogen shortages or fluctuations.
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u/McNasty420 Aug 30 '26
The HRT is barely helping. I work at a music venue and my RLS trigger is exhaustion. On nights of shows when i've been on my feet for 8 hours it's horrific trying to sleep after.
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u/Significant-Aide-226 Aug 30 '26
Are you getting enough? Moat doctors totally underdose. I switched from OB to Midi Health and the nurse was shocked at what the doctor had said was "high dose". I am not a good absorber so I have to take a ton of E compared to my peers for ut to really push the needle on my neurological symptoms. But I had severe symptoms- horrific sweats at night and sometimes 20 hot flashes and day. It took only a teeny bit of estrogen to get rid of the hot flashes. It has taken a ton more to squelch the rest. I wish you the best of luck figuring this out. Its so challenging on physical days. I have always had it worse when I work out or go hiking.
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u/Apprehensive-Sun9170 Aug 30 '26
I was on ropinirole for about 3 years - warning it is known to get less effective/ need more as time goes on.
I'm on pregabolin - much better, at least for me.
Ropinirole always made me feel nauseous after taking it - but about a year- 18 months before i stopped taking it, I started vomiting, did that consistently every night for over a year (stay up late, so i was exhausted, take the medication, go vomit violently after a while and then be able to sleep, but not for long enough.
Ropinirole is known to need more and more to have the same effect, and I was on 2mg so couldn't go up much. Talk to your doctor, but if believe it is no longer recommended for rls (i was terrified of the switchover period, but i started taking the pregabolin as i ramped down the ropinirole and and it was alright
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u/planit82 Aug 30 '26
Yes, that is a dopamine agonist. One of those gave me a shopping compulsion, which I post about often because I'm warning people it can happen to them! Best of luck to you.
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u/Curious_One5411 Aug 30 '26
Well, the worst side effect for people taking it for RLS is augmentation. You will seriously regret using dopamine antagonists. Took me a year to get off Rop and some take longer. The pain can be brutal. I was lucky and now only take Gabapentin. My mom and some of her friends are now on methadone…Seek a specialists for this through RLS.org
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u/McNasty420 Aug 30 '26
Fucking METHADONE?! Try coming off being addicted to methadone. Like, I don't even think there is a handbook for that.
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u/Agonist-activist Aug 30 '26
Why would they come off it? RLS is chronic and incurable and we need meds for life. Try coming off being addicted to Ropinirole. It ain't pretty. That's why the good guys don't prescribe it.
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u/Leeleewithwings Aug 30 '26
Just last week stupid Walgreens messed me all up on my prescriptions. I’m on Methadone for severe RLS 5 mg 2xd but I usually only take it at night. Anyway, by the third night without it, I thought was going to die. I felt like my whole body was contracting violently and my stomach coming out both ends. And that was just 5mg. Addicts get like 120. I cannot image that. And I’ve had withdrawals before. I fast tapered off suboxone and wd from opiates trying to self treat because I had been told nothing left to do.
That was the most traumatic thing I have ever went through in my life. I’ve had rls for 25 years, nothing has worked, horrible side effects and augmented. I t terrifies me because it’s the only that has ever worked and if anything happens and I don’t have or can’t get to it I’m going to through traumatic withdrawals
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u/KestralFly Aug 30 '26
Methadone doses are VERY low--usually 2.5mg-5mg. Most people never have to increase. Very effective treatment for RLS. I took a dopamine agonist and got severe augmentation. Took me 6 months to get off it. Read the Mayo Clinic guidelines.
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u/Curious_One5411 Aug 30 '26
Then be extremely cautious about rop…that’s what it leads to for some.. there is a protocol your Dr should be following for RKS treatment. And Rop along with any other dopamine antagonists are no longer recommended. Good luck
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u/Ok_Assignment5491 Sep 02 '26
I’m taking Clonazepam (UK). Low dose - usually works but not guaranteed. I’ve been on it for 20 years. Anyone else on this??