Coffee good, coffee bad...

[Tharg]

As for others here, I find a strong espresso almost instantly relieves RLS in the middle of the night. On the other hand, too much coffee during the day definitely causes worsening of symptoms in the evening. By gradually lessening my daytime intake I find that two coffees in the morning and two in the afternoon is the max. Last one no later than 4pm. Until I discovered this, I was getting severe symptoms after taking medication (ropinirole); sometimes even hot bath did not work after onset. Now, take pills, wait and hour or so, go to bed. No probs.

Looking at the science of it all, it seems to me that the effect of coffee/caffeine is dependent on the timing of taking your drugs. Taken, relatively, soon after drug ingestion (early hours) it seems to reduce symptoms. Taken after the effect of the drug wears off (during the day), it will worsen them. That's the way it works for me, at least. Knowing the devious ways this condition works, however, it will be different/variable for every other sufferer! For what it's worth, have also renounced chocolate and cakes and sweet desserts. This seems to help but is very sad because I make a damn good sachetorte and tiramisu!

Tragedy is, I have just been to (private and expensive!) neurologist to get medication changed because of "augmentation". Now, well, it ain't broke any more, so I'll wait and see. The private route for neurologist was only option: waited two weeks for appointment. NHS wait is nine months! Was worth it though - just to find a medical professional who really understands RLS and knows what a life-changer and life-destroyer it can be. He described at as a "demon living inside you". Bloody right!

[Madlegs1]

Thanks for the informative post.Delighted you found a good neurologist- any cost is worth getting someone who understands the condition.

Maybe let Kaarina know his name and contact details, by private message , so she can add it to her 'little black book' 😜

Long may you have success.

[Hidden]

Brilliant.

Apparently!

Good that your neurologist has some insight and understanding of the RLS experience.

Being a sceptic I'd add, the proof is in the pudding, what treatmnent for augmentation has this neurologist suggested?

Of pudding - as you've discovered SUGAR is a no no for RLS.

Of caffeine - some people say it makes RLS worse,some say betterf. My observation of what they write is that taking caffeine too late in the day can make RLS worse when it starts. However once symptoms start it may make them better. It may be the timing of the medication, but I doubt it since it apparently happens with people who don't take medication too.

[Tharg in reply to Hidden]

Augmentation was on ropinirole. Neurologist prescribed pregabalin as a replacement with changeover to be a gradual simultaneous decrease of ropinirole and increase of pregabalin. His thinking being change things to try and catch it out. From my experience of the condition that seems pretty sound. Have found that always changing diet factors and exercise/resting behaviour seems to, at least in part, keep the demon at bay. My ability to cope with withdrawal was also a factor he had to take into account.

He also prescribed clonazepam to cope with uncontrolled symptoms when the drug does not work and even the hot bath et al fails to deal. Said it might help shift the Red Mist!

[Hidden in reply to Tharg]

Great, in my opinion a knowledgeable neurologist!

[Tharg in reply to Hidden]

Cheers, Manerva. Comforting to see that the expert here, agrees with my expert there. I'll see how it goes and will post any developments here.

[Hidden in reply to Tharg]

Yes, let us know how you get on.

[Joolsg]

Brilliant that you've found a neurologist who knows About RLS. Please let Kaarina have the name as finding a good neurologist is difficult.

[Hidden]

What a good description, the demon living inside you. It’s 20.50 & hasn’t yet kicked in this evening so bliss. But at some point it will & then hell will ensure for a lot of hours.The coffee story is fascinating. I try not to take much till I need to switch off the RLS though take some in am. I sometimes take during the day to relieve fatigue but if I tale a lot I reckon I get withdrawal symptoms & the RLS kicks in sooner or worse that evening.

I take no other treatment

[DerAusgewanderte]

thank you for posting. I am only beginning to understand the concept of augmentation, withdrawal and controlling the demon inside me. I have been taking pramipexole for a couple of years now. As a scientist I will blame myself for not reading the warning signs sooner and not getting educated. Augmentation started about 6 months ago and I decided on my own that it's best to stop this before it gets worse (not knowing what augmentation is at that point). I had no idea how hard this is on our lives and it's great to see the help form folks on this forum.

I reduced my caffeine intake and try to stop before 2pm in the afternoon. It helped a little. But then I realized the same experience you have. When I get up at 2:30am in the morning after 1.5-2 hours of trying to sleep and drink a double shot latte I feel perfect for a good amount of time. Of course then I am useless during the daytime and getting my low point at around noon.

bottom-line, I wanted to thank you for posting this because I thought this must be a fluke.

[Tharg in reply to DerAusgewanderte]

DerAusgewanderte - glad to have been helpful, even if only a little bit. It is very hard to deal with RLS in a scientific manner. It affects each victim differently and its effects/symptoms change so frequently and unpredictably. A "demon" is not going to behave in a scientific manner. I find that whatever you try, reducing caffeine for example, will only benefit you for a short period - until the demon learns about it and changes its attacks. Best approach, I think, is to try and keep it guessing. Keep changing factors which affect the condition - rest periods, diet, exercise etc. - sometimes before they have had an effect.Big problem I find is that once it has "learnt" that you've changed something, it will not let you change back. For example, I gave up eating desserts or anything with lots of sugar ages ago. As an experiment yesterday I tried eating a small amount of ice-cream (two small dessert spoons). Wham! Full onset of nasty symptoms, drugs not working so off for a hot bath!