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Where is my caffeine?

Posted: Tue Jun 07, 2016 1:44 pm
by Stainless
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.

Re: Where is my caffeine?

Posted: Tue Jun 07, 2016 4:25 pm
by debbluebird
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.

Re: Where is my caffeine?

Posted: Tue Jun 07, 2016 7:25 pm
by ViewsAskew
I dearly hope I am never sensitive to caffeine and chocolate!!!! I feel for both of you. But, very glad you have a solution.

Re: Where is my caffeine?

Posted: Wed Jun 08, 2016 6:02 am
by Sojourner
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.


Wishing all who visit here some peace this night

Re: Where is my caffeine?

Posted: Wed Jun 08, 2016 8:10 am
by badnights
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.

Re: Where is my caffeine?

Posted: Wed Jun 08, 2016 10:04 am
by Rustsmith
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.

Re: Where is my caffeine?

Posted: Wed Jun 08, 2016 5:14 pm
by Polar Bear
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.

Re: Where is my caffeine?

Posted: Thu Jun 09, 2016 4:24 am
by Yankiwi
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.