Where is my caffeine?

Here you can share your experiences with substances that are ingested, inhaled, or otherwise consumed for the purpose of relieving RLS/WED, other than prescription medications. For example, herbal remedies, nutritional supplements, diet, kratom, and marijuana (for now) should be discussed here. Tell others of successes, failures, side effects, and any known research on these substances. [Posts on these subjects created prior to 2009 are in the Physical Treatments forum.]

Important: Posts and information in this section are based on personal experiences and recommendations; they should not be considered a substitute for the advice of a healthcare provider.
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Where is my caffeine?

Postby Stainless » Tue Jun 07, 2016 1:44 pm

I have been struggling on 4 mg. ropinirole er for two months and was considering going another direction when I see my doctor this month. I had good days and bad but bad days started as early as noon and lasted the rest of the day. I was not sure if I was augmenting or just struggling. Then I started having a bunch of good days with manageable symptoms in the evening. I thought I was just lucky but then found out my wife had weened us off caffeine and by then I was drinking decaf, bless her.

I have been a big coffee drinker all my life and rarely get rls in the morning unless I am on no drugs (then 24/7). I never drink coffee after morning or imagined it was a rls problem. It only took a about a week to ween off and I have been caffeine free for about a week but just found out yesterday. This topic has probably been beat to death and everyone is so different with this disease, but I just hope it lasts. Right now I plan to go another six months if this stays about the same. I think not knowing I was quitting really helped and decaf is maybe helping a bit with sleep too.

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Re: Where is my caffeine?

Postby debbluebird » Tue Jun 07, 2016 4:25 pm

Over the years, I became very sensitive to caffeine. I can't even eat the "good" chocolate, unless I want to have symptoms. Good luck to you.

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Re: Where is my caffeine?

Postby ViewsAskew » Tue Jun 07, 2016 7:25 pm

I dearly hope I am never sensitive to caffeine and chocolate!!!! I feel for both of you. But, very glad you have a solution.
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Re: Where is my caffeine?

Postby Sojourner » Wed Jun 08, 2016 6:02 am

I have had mixed results with both caffeine and alcohol. I consume both infrequently but do so on occasion…caffeine when I have an early morning drive on little sleep and a sip of alcohol on holidays or a special occasion. Some nights following consuption of either can be quite problematic. While on other nights, I experience very little symptom increase and sometime I sense even a small positive response. Go figure. With respect to the alcohol…probably a good thing that it is potentially rls hazardous as otherwise I could be a raving alcoholic.

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Re: Where is my caffeine?

Postby badnights » Wed Jun 08, 2016 8:10 am

I also have had mixed results. I used to be an all-day-long coffee drinker, but avoid it now except for the odd morning because it seemed to cause WED aggravation a lot of the time. But not always. And if I only have one cup one day and then none, I get no problems that I Can notice.

I use black tea instead, which has caffeine albeit much less. I kind of suspect it might not be caffeine that causes the problems for me, but other substances in the coffee.

Ditto for alcohol - some beers are ok and some wines are ok. At first I thought red wine and draft beer were the culprits, but it is more complicated than that. There might be some ingredient(s) in some wines and beers that cause a problem, as opposed to the alcohol itself.
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Re: Where is my caffeine?

Postby Rustsmith » Wed Jun 08, 2016 10:04 am

I do not appear to be sensitive to caffeine. For many years prior to the worsening of my RLS I drank large volumes of both hot and iced tea along with a huge number of diet Cokes. I didn't drink coffee simply because I was not a fan of the taste. With my RLS diagnosis and all of the talk of it being a trigger, my wife insisted that we switch to decaffeinated tea and to decaf diet Coke. The switch didn't seem to have any impact upon my RLS. Then about a year later I found that I now liked the taste of coffee. I switch between decaf and regular coffee and so not see an impact on my RLS, but I also limit myself to one cup per day. As for wine and beer, I cannot drink wine due to my very severe allergies. I would drink one beer or mixed drink about five evenings a week, but had to completely stop that when I started taking an opiate. Whether the alcohol was doing anything is hard to say, but I didn't think so at the time.

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Re: Where is my caffeine?

Postby Polar Bear » Wed Jun 08, 2016 5:14 pm

I don't know of coffee has any bearing on my symptoms. There is nothng obvious to note.
For the past 3 weeks I've had as little as one coffee daily and seen no difference, but I still try to keep to perhaps 2 or 3 at most, as compared to the many cups of coffee I drank when working in an office environment.

Never touch alcohol, never found one that I found palatable......
Also I rarely drink soft drinks, mostly water - recently lost the appeal of even carbonated water and now usually drink 'still' bottled water or tap water.
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Re: Where is my caffeine?

Postby Yankiwi » Thu Jun 09, 2016 4:24 am

I'm very intolerant to caffeine. Twenty-five years ago I drank pots of coffee all day at work, because of insomnia I gradually stopped in the afternoon then all day. Caffeine must have also triggered my RLS (which I was only vaguely aware of) because I'd find myself doing wall stretched in the night.
I never drink Coke (although I like it), caffeine-free Coke is not available in New Zealand and I think it tastes funny anyway. I rarely drink wine but one glass is my limit. When I have two my legs punish me. Because I live in a rural area, I'm lucky (or unlucky) to have tank water which we filter. It has a great taste.

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