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.
67java89
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Joined: Tue Jul 26, 2016 3:35 pm

Caffeine

Postby 67java89 » Wed Aug 03, 2016 2:05 pm

I usually enjoy a cup of coffee after dinner, but I've decided now to not have any caffeine after 6pm. I've been doing this for a week and I will say it has helped a little. I'm not one of those people who can ever give up caffeine completely...I don't drink or pop pills anymore, so it's my only vice. Plus with so many sleepless nights I drink coffee because I'm tired. It's a vicious cycle. But if this one small change helps, I'm encouraged.
Sleep is a basic need.

ViewsAskew
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Re: Caffeine

Postby ViewsAskew » Wed Aug 03, 2016 2:09 pm

It definitely helps some of us.
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

Rustsmith
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Re: Caffeine

Postby Rustsmith » Wed Aug 03, 2016 2:26 pm

I cannot say that I noticed that much improvement by avoiding caffeine, but I do it now just in case. I drink a lot of diet Coke, so I now buy the decaffeinated version and my cup of morning coffee is also decaf now.
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

ViewsAskew
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Location: Chicago

Re: Caffeine

Postby ViewsAskew » Thu Aug 04, 2016 1:39 am

I used no caffeine for 15 years - still had RLS and PLMS. When the RLS got as bad as it is now, my neurologist at the time suggested I use it to help wake up. I started drinking coffee again after all those years without. No difference.
Ann - Take what you need, leave the rest



Managing Your RLS



Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

Polar Bear
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Location: N. Ireland

Re: Caffeine

Postby Polar Bear » Thu Aug 04, 2016 12:54 pm

Regarding Diet Coke which contains Aspartame there are sufferers who would say Aspartame triggers (does not cause) rls symptoms. Upon some searching I find that "there is no scientific evidence that Aspartame has a connection with rls".

It is like our mantra - we are all different.
And of course the internet is a minefield of misinformation.
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

67java89
Posts: 32
Joined: Tue Jul 26, 2016 3:35 pm

Re: Caffeine

Postby 67java89 » Thu Aug 11, 2016 2:40 pm

Update: I am continuing to forgo caffeine after 7pm, and at first it seemed to be helping, then something strange happened. I don't have the restless legs as I fall asleep but I have it closer to the morning, which I've never had before. This doesn't make sense to me. Has anyone else heard of this or experienced this? I'm sticking with my same dosage of Ropinirole. I don't want to up it because I don't want to get deeper into the augmentation hole right now.

Also, I've started taking Gentle Iron on an empty stomach, and no difference yet, but I'll give it time. Thanks for your comments!
Sleep is a basic need.

Polar Bear
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Re: Caffeine

Postby Polar Bear » Thu Aug 11, 2016 4:52 pm

I have RLS symptoms pretty much 24/7 and would be prone to awaken during the night with symptoms.
I wonder if you were to save a little of your evening dose of ropinerole and take it later, during the night, this helps me.
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

67java89
Posts: 32
Joined: Tue Jul 26, 2016 3:35 pm

Re: Caffeine

Postby 67java89 » Thu Aug 11, 2016 6:00 pm

Polar Bear wrote:I have RLS symptoms pretty much 24/7 and would be prone to awaken during the night with symptoms.
I wonder if you were to save a little of your evening dose of ropinerole and take it later, during the night, this helps me.

Good tip! Thanks
Sleep is a basic need.

debbluebird
Posts: 1661
Joined: Mon May 21, 2012 3:27 pm

Re: Caffeine

Postby debbluebird » Thu Aug 11, 2016 6:44 pm

67java89 wrote:Update: I am continuing to forgo caffeine after 7pm, and at first it seemed to be helping, then something strange happened. I don't have the restless legs as I fall asleep but I have it closer to the morning, which I've never had before. This doesn't make sense to me. Has anyone else heard of this or experienced this? I'm sticking with my same dosage of Ropinirole. I don't want to up it because I don't want to get deeper into the augmentation hole right now.

Also, I've started taking Gentle Iron on an empty stomach, and no difference yet, but I'll give it time. Thanks for your comments!



That happens to me once in awhile. I think the med is wearing off. I take a dose in the evening and a dose around midnight or 1 am. Otherwise, I'll get symptoms in the middle of the night, like 2 or 3 am.

debbluebird
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Joined: Mon May 21, 2012 3:27 pm

Re: Caffeine

Postby debbluebird » Thu Aug 11, 2016 6:49 pm

67java89 wrote:Update: I am continuing to forgo caffeine after 7pm, and at first it seemed to be helping, then something strange happened. I don't have the restless legs as I fall asleep but I have it closer to the morning, which I've never had before. This doesn't make sense to me. Has anyone else heard of this or experienced this? I'm sticking with my same dosage of Ropinirole. I don't want to up it because I don't want to get deeper into the augmentation hole right now.

Also, I've started taking Gentle Iron on an empty stomach, and no difference yet, but I'll give it time. Thanks for your comments!


I started doing that, stopping caffeine in the afternoon. Then I kept moving in earlier and earlier. Finally, just in the morning. Now, none at all. This happened over many years, maybe 20 years or so. I could tell the difference. Then, I discovered it was also artificial sweeteners. It doesn't affect everyone.

Stainless
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Joined: Tue Dec 01, 2015 9:30 pm

Re: Caffeine

Postby Stainless » Sun Aug 14, 2016 12:56 pm

My wife clandestinely weened me off caffeine in a week after a lifetime of drinking it. I was amazed how smoothly it went since I used to get a headache if I skipped it for one day. It seemed to help a bit with rls but more than that it significantly improved my bowels and I don't miss it much. I still drink too much decaf. Rick

veldon75
Posts: 43
Joined: Sun Sep 21, 2014 3:45 pm

Re: Caffeine

Postby veldon75 » Sun Aug 21, 2016 12:45 pm

I drink coffee at work usually until 2 I noticed my legs jerk all day now starting @ 9 or 10 am, so I'm trying to cut back and drink green tea after lunch it has a little caffeine just to help me stay awake.

badnights
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Re: Caffeine

Postby badnights » Thu Aug 25, 2016 5:01 pm

I am continuing to forgo caffeine after 7pm, and at first it seemed to be helping, then something strange happened. I don't have the restless legs as I fall asleep but I have it closer to the morning, which I've never had before. This doesn't make sense to me. Has anyone else heard of this or experienced this? I'm sticking with my same dosage of Ropinirole. I don't want to up it because I don't want to get deeper into the augmentation hole right now.
The morning WED/RLS may have nothing to do with the coffee. DAs can cause rebound, which is a worsening of symptoms when they wear off, worse than they would have been if you hadn;t taken the medication. It's good you're not upping the ropinirole dose, but it's time to do something about the augmentation.
Beth - Wishing you all restful sleep tonight
WED/RLS AUGMENTATION:
viewtopic.php?f=5&t=6532&p=61601#p61601
Discussion Board Moderator's posts don't reflect the RLS Foundation's opinion & are not medical advice


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