Restless Legs Syndrome (RLS) Discussion Board

It looks like I am hypersensitive to Caffeine.

For a long time I had symptoms like having a strong urge to go to the toilet every 10 minutes (but only in the late evening and night) or being unable to stop my brain from thinking.

Then I had days were I wasn't suffering from these symptoms but never had an explanation why. For me it seemed totally random until I figured out that drinking caffeine after 2 p.m. is a a seriously bad idea.

From this day one I was able to fall asleep within 5 to 10 minutes ... at least for a while.

It was pretty good for almost 2 months but then my RLS came back. It came back hard and I had to take a lot of opioids to fight it. But taking high doses of opioids is problematic. Right now I am in my 5th year of taking opioids and so I already have quite some tolerance but because no other drugs for me, I tried all the alternatives, I am forced to stay on the opiods. All I can do is temporarily reduce the dose when I have holidays or less stress.

The situation developed and at some point even high doses of opioids didn't help against my RLS symptoms ... then I figured ... maybe it is the caffeine again.

I was drinking 1 or 2 coffees in the morning or alternatively some coke. I thought it is okay but now it looks like it wasn't.

I completely stopped the consume of caffeine and since then my symptoms improved and reducing opioids was easy.

So it looks like I am hypersensitive over caffeine.

Ya, I was consuming it a lot. Especially on all these days were I wasn't able to sleep ... when I was tired the next day and had to function. Now it looks like I was just worsening everything without noticing what really was going on...

I really hope eliminating it continues to work for you. It is tough though. I like my caffeine - would be sad to lose it. Having said that, I'd give it up in a heartbeat if I thought it'd help with the rls.

I had to do the same thing. Over time I also had to eliminate chocolate.

I'm hypersensitive to caffeine too and get laughed at when I order a decaf, trim milk latte, but I laugh along with the barista calling it a hot coffee milkshake. I wonder if we caffeine intolerants develop an anti placibo (nocebo) effect and can attribute a bad night to possibly being given caffeine when in fact we haven't. I have sent back coffee when the server wasn't sure which was which though.
As far as chocolate goes, I'd hate to have to give that up but the other,very stressful, day, I ate 80g of a 100g bar of chocolate, threw away the remaining 20g and had one of the worst nights I've had in a long time. Even after taking 60mg of codeine it took an hour for my legs to settle down. I think it was due to the chocolate but I also went for a much longer walk than I had for months. It seems there is always more than one variable that could cause a flare up.

Qyx, I had to do the same thing. It took years to accept it. I kept rebelling and thinking I could get away with it if I kept it to one cup, but every time I tried to re-instate coffee in my life, it eventually became a problem, even at one cup a day.

So I quit completely, except once every 5 or 6 months I might allow myself a cup if I'm really wiped out. I have learned not to indulge again the next day (tempting, because the effects aren't evident after only one cup one day).

I do drink tea now instead, mostly oolong tea but sometimes black as well, and even when I drink a lot of it, even in the evening, I don't get increased WED. I can also eat chocolate without any apparent ill effects (but I don't do that day after day). There are numerous caffeine molecules, and a heap of non-caffeine substances in coffee, so I wonder, is it "caffeine" that's the culprit, or only a certain kind of it, or something else entirely that's in coffee?

Anyway, I clearly have to avoid coffee. Maybe someday I will realize I should be avoiding tea too.

There is a lot of caffeine in chocolate and most sodas.

I have never noticed that caffeine has any effect on me, and there have been times that I wished that it did. However, my wife is susceptible to caffeine and since restricting caffeine is always part of the recommendations for sleep issues, I didn't have much choice about giving it up. I still have a cup or two of coffee each morning, but my diet cokes are now caffeine free and the iced tea that I live on is now also decaffeinated. I haven't noticed any effects (good or bad) of giving it up, but it also wasn't very difficult to do. So my diet coke and iced tea are now decaffeinated as are the few times that I have coffee after dinner. Now chocolate, giving that up is something that isn't going to happen.

I thought, for many years, that caffeine was responsible for headaches I had, so I didn't have any - no sodas, only herbal teas, no coffee and only the occasional chocolate - and my RLS wasn't affected at all. I actually started drinking coffee when augmented at the urging of my neuro who suggested it could help wake me up some each day. And it did - then it only took a few swallows to alert me. Fast forward several years and two giant cups do nothing. My RLS levels have been constant, so guessing it isn't an issue for me, either.

But, since it isn't very helpful anymore, I have thought about stopping it if only to allow it to be more effective again! Who knows, now that I drink as much as I do, I might find that it is causing problems.

Isn't that all weird? I had such a clear effect. That was years ago, pre-insane-WED. I used to drink 2-4 litres of percolator coffee a day! Massive quantities. Then at some point I noticed I was having trouble sleeping, and eventually realized it was the coffee, so I cut back. I was OK for years by avoiding bedtime & evening coffee, but eventually had to stop afternoon coffee as well. I was still drinking it all morning (often spilling into the afternoon, too) when I Was diagnosed. And kept at it for a number of years afterward.

Our bodies do change. When I was a kid, I gardened with my grandfather. My house was only a half mile away and I spent a lot of time there in the summers. He was a political cartoonist and worked second shift so his artwork would fit with the political goings-on and be ready just before the paper went to press around midnight. During the late mornings before he went to work, we'd weed, hoe, and otherwise tend our plants together.

My point about bodies changing is in here, lol...I can remember him pulling poison ivy with his bare hands and then using it on top of his head as a hat to shade his head.

One year, when I was about 25, I came home to visit (I had moved out of state) and found him with poison ivy all over - his body eventually decided it WAS going to react.

Ann, absolutely. My father worked at the shipping ferry between here and Scotland. In those days before mass refridgeration and containers it was a flat bed truck that carried stacked boxes of fresh fish. The drivers were very keen to get onto the ferry especially if it was the last one of the day, so that the fish made it to market on the mainland for the next morning. As the fish was easily accessed it was not unknown for a driver to show gratitude to a helpful ferry worker who was out in all weathers and was probably soaked and very cold. Dad would arrive home with a shopping bag of fresh giant prawns, sometimes a whole salmon wrapped in a piece of newspaper.

The prawns would be cooked up and we'd sit around the table shelling them and dining like kings. Till one day..... out of nowhere, eating her first prawn, mother's mouth and throat started to swell and we rushed her to the hospital which was only 5 minutes distant. She never touched a prawn after that. It was like the flick of a switch.

I guess that's why beekeepers can be stung a little over several or many years and then one day after being stung they swell up and can't risk being stung again.
I used to be able to eat chocolate any time although the amounts were not usually huge unless really stressed. But it wasn't a good idea to whip up one of those microwave mug brownies at 7.30 last night. It was delicious but not worth the ongoing aggro in the night. I think I've learned that lesson!