Restless Legs Syndrome (RLS) Discussion Board

I realize caffeine generally is not good for RLS sufferers, but do most of you abstain from caffeine altogether? If so, how do you get going in the morning after a presumably lousy nights sleep?

I asked my doc about this once, and he told me I should be OK drinking 2-3 cups per day, so that's what I've been doing (plus about two cans of pop in the afternoon). It's hard to tell if it's had any impact; I get RLS daily despite meds (.25 MG Mirapex). I fear that I would be zombie-like if I had to give up my coffee and pop. I appreciate any feedback.

I think for most of us we go by the "If it's not bothering us, then don't change" methodology.

If you give it up, what happens? If there is no impact, then keep doing it!

How long have you been using the .25 Mirapex? Has it ever worked? It may be time for a split dose, a higher dose, or to switch...

I am actually in the middle of an experiment of abstaining from coffee. I am on day 9, and for the most part, it appears the onset of my RLS is delayed by about 2-3 hours. It used to start around 1:00 or 2:00 p.m., but now it's 3:00 or 4:00 p.m. I'm trying to figure out why I'm getting the daytime RLS, and I'm hoping to rule out caffeine as the culprit, but it appears it may have some effect. I've only been drinking coffee for about 3 years or so, and as best as I can remember, the daytime RLS started about 2 years ago. That's why I thought there may be some correlation.

I'm pretty sure I'm augmenting from the Mirapex, and that is likely the biggest reason for the daytime RLS. I've been using it for 7 years, and it did work well for the first 5 years or so. I am seeing my doctor on Monday. The last time I saw my doctor (2 years ago, when the daytime RLS first started), he was hesitant to prescribe an additional dose of Mirapex. His advice was to get up, stretch, walk around the office for a while. That really didn't do much, and it's gotten to the point where my work productivity is definitely suffering as a result of the RLS.

I stopped it completely for a while. But now I use it as a drug, because frankly I cannot wake up without it, whether from drug hangover or being tired I have no idea anymore. I take 2-3 cups in the morning, every day except Monday (this is my new routine; I'll see if it works), to give my body a break and a chance to clean the caffeine out if it's been building up. (Caffeine has a 7-hour half-life but I 'm haven't figured out what that means in tmers of how much your body can process in a day. ) And I never ever drink after noon.

But I feel it by the mid to late afternoon, and sometimes I have to take some of my medication early to deal with it. But how else am I supposed to wake up? I started using coffee as a drug when the new sleep doc I saw said it was a possibility (depending on the results of the sleep studies I haven't done yet) that he would give me a drug to help me stay awake. He said other things too, of course, and I don't know why, but this one thing made me think, why don't I drug myself to stay awake, so I started drinking coffee again. It seems to be working well in keeping me functional during the day, even tho I pay a bit of a price sometimes.

I drink decaf - don't know if it makes a lot of difference but I've got nothing to lose. I rarely drink regular coffee and never drink fizzy pop.

I've drank a cup of coffee in the morning ever since I can remember. RLS visited on me about five years ago, so at least I know coffee isn't a cause or anything. As to whether it makes it worse, I only drink coffee in the morning, and yet I'll have RLS all diff times of day and night, especially as the day wears on. If I forget my coffee, I get a headache, and I cannot drink coffee or caff drinks after dinner, keeps me awake. I should think if your RLS is getting worse, your doc should respond with additional or diff medicine. In the meantime, keep up with the stretching and also put heat on your legs for when you lay out. One thing I do know that will aggravate RLS is over-the-counter antihistimines, so if you've been taking those recently, could be that is the problem.

I suppose you could ask if your doctor would prescribe Provigil or Nuvigil (same active drug) to help you stay awake, but in my experience, those drugs aggravated my RLS. They're not supposed to, though.

I think you'll find that if you stay off the caffeine long enough that you will no longer need it to wake up. If not, you should talk to your doctor about the daytime drowsiness and see if something can be done to address the cause, like figuring out why you're not getting enough quality sleep.

Caffeine can definitely make RLS worse in a lot of people, and it sounds like it contributes to yours. So I guess it's up to you whether you want to give it up or to ask the doctor for additional meds to control it.

I personally have to have coffee when I wake up but try to keep it many many hours before bed. So to me it's like a strictly when I first get up thing.

I just got off Mirapex for the second time.
It made me very sleepy during the day.

I've been dealing with tiredness caused by Methadone for a while and almost always end up taking a nap in the middle of the day..

Although I have found, taking 1 or 2 caffeine tablets (NoDoz or offbrand) usually does not interfere with my RLS.. Granted I am on 15 - 20mg of Methadone so that helps a lot.

I do drink caffeine free soda (Diet Sierra Mist) however.

Isn't it crazy that we soooo need the caffiene because we're so tired and then we can't sleep.
This past 7 days I slept pretty good except for 2 nights..Last night up at 2:30. I am trying to re-set my clock so if I HAVE to nap I try to do it early, pm naps are sabotoge for me.
After my morning coffee I only drink Crystal lite lemonade.

SquirmingSusan wrote:I think you'll find that if you stay off the caffeine long enough that you will no longer need it to wake up.

I am already finding this to be true after just two weeks of reduced caffeine intake. Although I'm not off caffeine completely (still have one pop in a.m. and one in early afternoon), I am noticing that I am less lethargic in the morning than I was the first few days. And my daytime RLS symptoms are much improved, so I will continue on and maybe even cut down to just one pop per day.

For almost as long as I can remember I have had RLS and have also enjoyed, (but maybe didn’t really need) 2 or 3 cups of coffee to start the day – then no more for the rest of the day. This year my RLS symptoms have considerably worsened and I have decided to stop drinking coffee. I do this not because I think coffee will worsen my RLS, (I long since decided that coffee early in the morning doesn’t affect RLS at night), but because I have seen from my home blood pressure monitor that repeated sleep-deprived nights has caused my blood pressure to rise. Raised blood pressure is, of course, the silent killer and can lead to stroke and heart attack. Caffeine raises your blood pressure, albeit temporarily, so I am doing all I can to keep my blood pressure down, including axing the coffee. Even decaffeinated coffee is not caffeine free.

I'd be interested to know if any other sleep-deprived RLS sufferers keep a track on their blood pressure levels?

Caffeine has a half-life in our bodies of roughly 5-6 hours, but it varies widely among people (eg for pregnant women it's 9-11 hrs, for people with compromised livers it can be even more). If you drink 3 cups before 10 AM, there's approximately 3/4 cup still in you by 8 or 10PM (two half-lives later), and a little over half a cup by about 11:30 PM.

Typical cup of brewed coffee has 100 mg caffeine (some have more, up to 300 mg). Depending on your sensitivity, that amount may or may not be a problem.

Well, my blood pressure was ultra normal this morning so I decided to treat myself to an early morning decaff coffee, but I didn’t enjoy it. So, coupled with what you have said, Beth, I think I’ll revert to my herbal infusions as my wake-up drink.

I have my coffee normally just in the morning.
My mom fell and is on life support, a meeting this morning..
I've been living on coffee til about 2pm and have been sleeping ok.
I think pure mental exhaustion has made me pass out at night.

Brenda