I've had RLS for almost 20 years. I take Pramipexole and it totally works. But, yesterday, I learned something new. I have never, never had caffeine any time after noon because it makes me jumpy and I don't sleep. (I don't sleep well anyway, so the caffeine meant I didn't sleep at all). But, yesterday, I was craving a Coke (which I don't regularly drink) at about 3pm. So, given that we're all under Covid house arrest and it doesn't matter if or when I sleep, I had a Coke. I usually take my medication at about 4pm but at 8pm I realized that my legs hadn't twitched at all and I hadn't taken my meds. I took them anyway because . . . well . . . habit. So, today I thought I'd do the Coke thing again. I forgot about it until my legs started twitching around 4pm. I immediately drank a whole can of Coke and my legs went still. I'll see how long it lasts. Bonus - I got my regular amount of sleep last night - seems the caffeine doesn't affect me like it used to. I told my daughter about the Coke helping and that everyone says that caffeine is actually a trigger for RLS. She went online and found this site and sent me some of the comments where people said Coke helps them. Glad to know I'm not crazy - perhaps the caffeine really does work.
Coke helps - very strange: I've had RLS... - Restless Legs Syn...
Coke helps - very strange
After reading several people reporting that coffee helped their RLS I started drinking it & found it helpful.
Like most food & drink triggers- it’s clear we’re all different.
Sugar, carbs & alcohol don’t worsen my RLS either.
Something about the effect of caffeine on adenosine. Adenosine is crucially involved in the balance between dopamine and glutamate, the two neurotransmitters causing the RlS symptoms. So, yes, it may have been the caffeine in the Coke. I hope it lasts and you can reduced your pramipexole dose a bit - always a good thing. Thanks for sharing.
That's really interesting. I have read about the effect dopamine has on RLS but haven't come accross the glutamate. Do you have any articles to recommend on that? Would love to find out more.
Caffeine also helps me to alleviate my RLS. If you drink Coke you should be careful which one you choose because the aspartame in Coke light makes my RLS hell.
Hi,just wondering which coke you recommend.Im always willing to try something that seems to work.I too take pramipexole and avoid sugary stuff and white bread but will give the coke a try.
I drank the real thing - Coca Cola. Not sure it would matter if it's just the caffeine you're after but maybe there's something else weird and wonderful in Coke that's calming my legs. I have yet to try coffee - somehow I just prefer a Coke in the afternoon. 🙂
Yes, thanks. I've avoided aspartame since the 70s when stories about its negative effects came out. Pepsi finally removed it a few years ago. I actually don't drink any 'diet' beverages but that's a whole other debate. 😀
Hi, that's great news for you. I suppose we are all different. If I drank coke I would be climbing the walls. Glad you found something to help.
I just got question for you could you please tell me that what dose of premipoxle are you on I tried for 8 years dose 0.88 mg two tablets few months I came off on premipoxle since nothing is working on my restless legs thinking I should go back on premipoxle please give me some advice
I took one 0.5 mg tablet for years, then had to start taking two tablets about 5 years ago. Because I have to take it in the afternoon, rather than before bed, I sometimes have to take another one sometime during the night. My doctor said she has a patient who take about 8 tablets a day! Before I started taking Pramipexole, I took two Tylenol 3s every day - worked well but it's not good for your liver. Keep on trying, anything and everything - there's an answer out there somewhere. Good luck.
My goodness. Whoever prescribed that amount of pramipexole is irresponsible.
The "official" absolute maximum dose of pramipexole for RLS is 0.75mg a day. However it is also recommendedthat the dose be kept low.
Some experts say more than 0.25mg.
2 X 0.5mg is over the maximum. If you take 3, then you're taking twice the maximum.
The danger of taking such a high dose is dopaminergic augmentation.
This a major complication of taking pramipexole.
From what you describe. you are already suffering some degree of augmentation..
I'd suggest then that you read up on augmentation. Rather than taking extra pramipexole it would be better to think about reducing it. Possibly stopping it altogether. Strange as it may sound this would actually improve your situation.
Try this link for a start.
My trouble with drinking a Coke after 6-7 pm is that I will be up every couple hours going to the bathroom
If it isn't one thing, it's another, right? 😕
Seems that way. After reading this I did have some coke last night around 7 pm, it was with some Jack Daniels. First time in awhile I’ve done this. I felt really relaxed after 2 of them. So relaxed I cut my pramipexole in half. And except for one time going to the bathroom, I slept soundly.
Fantastic!
This may or may not apply to you, but I had a problem of waking up in the middle of the night to go to the bathroom. Unrelated to this, I had heard that Vitamin D helps to "fight" covid, so I got tested and my vitamin D level was 31 which was barely normal. I asked my primary care doctor about Vitamin D and he said to take 1000 I.U. of vitamin D3 which should raise my vitamin D levels to 40 - 50. I started taking the D3 and within a couple of days, I noticed that I slept the whole night through with no bathroom trips. Since November 2020 when I started to take the d3, except for maybe 1 or 2 occasions, I slept the whole night thru. You may not have a prostate problem like I did, so this may not help you with the trips to the bathroom. But, you never know. Good luck!
My Dr already has me taking D3. But the info is appreciated.
Update on my "experiment". I drank the Coke at 4 pm and my legs were great for 8 hours, until midnight. If I could wait until bedtime to drink the Coke, this would be perfect, but my legs start twitching in the afternoon. I did find, however, that taking my meds at midnight/bedtime allowed me to sleep for a solid 6 hours for the first time in ages. So, I'm concluding that, because I take my meds in the afternoon, they wear off during the night which has, no doubt, been the reason for my poor sleep habits. So . . . a Coke in the afternoon and meds at bedtime; or, meds in the afternoon with a "booster" at bedtime. I'll go for the Coke.
We are all different. The refined sugar and caffeine sends my RLS into orbit. But whatever works, that is all that matters
Sounds to easy but got to give it a try thank you
Any news on the coke experience? I am thinking of giving it a try. Is it best to drink diet coke or a proper sugar one?
We're all different. The sugar in Coke can be a trigger for some people, but so can the sweeteners in Diet Coke. Same with caffeine: some find it a trigger, some a boon. It's a case of grabbing a straw and sucking it to see (straw not actually compulsory 😉)
Hi, tried coke last night and didn't help. It's a shame. 
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