Coffee again

Hi, can't find the recent post about coffee to add to again but just wanted to say I've been trying this last few nights and I think it works to a reasonable extent. A small amount of coffee once have had a RLS wake up does seem to switch it off better than most other things I've tried, sometimes in combination with a bath and then seems to let me sleep for longer than usual, say around 3 hrs or more which is bliss and then I woke with still legs this am instead of my usual last dose of thrashing around. I don't take anything else at present.

[Kaarina Administrator]

Was it this thread, Alison?

healthunlocked.com/rlsuk/po...

[Hidden in reply to Kaarina]

Yes, thank you. Sorry to have started a 2nd thread

[Hidden]

I doesnt always work for me, if legs are going nuts then none of my tricks work. But, most times it does help get me a few hrs sleep when RLS wakes me in the night, I have been doing the drinking coffee in the night or even in the afternoon if RLS starts up then, for a while now, i am still taking my meds aswell, the coffee is what i call part of my bag of tricks that i use.

[Joolsg]

I don’t like instant coffee but I’ll try it next time I wake in the night.

[Hidden in reply to Joolsg]

If you like coffee i cant see that any type of coffee would not work the same, doesnt have to be instant.

[Joolsg in reply to Hidden]

I used to love capuccino or Latte but gave up caffeine and milk so haven't had a coffee in over a year. Woke up with the jumpy legs at 3.30 and just tried a coffee so will see how it works.

Suspect my RLS is playing up because of a change in the weather.

[Pippins2 in reply to Joolsg]

Jools did it work? X

[Joolsg in reply to Pippins2]

I’m not sure if it was coffee or daylight. I watched Corrie on catchup and fell asleep at around 5am. I’ll try it again tonight if the legs play up. I have had a good run for last 6 months- RLS every night but very mild and a few stretches have allowed me to get straight back to sleep. I suspect it’s just a cyclical worsening but I’ll try the coffee again and try going straight back to sleep.

Jools x

[Pippins2 in reply to Joolsg]

Thanks for the feedback Jools. I will look out for any updates. Glad you have had a reasonable 6 months x

[martino]

Yesterday I woke around 4.00am with my legs sliding up and down the bed. I was warm in bed and didn’t want to get up and walk around and I forgot about the coffee idea. Somehow it seems odd to me that if I want to sleep I drink coffee. Perhaps it is the getting up and moving around as much as the coffee itself that calms the legs. I will have to give this more thought for next time my legs start wandering!

[Hidden in reply to martino]

I definitely think it's the coffee. I always have to get up when the RLS wakes me which is usually at least 3 times each night. I have baths which now don't always work and wander around and do puzzles trying to find something which flicks the 'off switch' so I can get back to sleep and hope I get a few hours. These last few nights I've been finding that coffee is helping to flick the off switch, and when it does it seems to stay 'off' for longer, around 3 hours

[martino in reply to Hidden]

Thanks Alison.

[Pam34]

I’ve not tried coffee, if I wake up then I find a dish of cereals or piece of toast helps me get back off. Maybe coffee would be better for my calories! My mum always used to say I never grew out of my 2am feed - that’s why I suspect I’ve always had RLS - mum used to call it st vitus dance! But food always helps!

[Hidden in reply to Pam34]

Pam had to laugh at what your mum used to say about never growing out of your 2am feed.

[Hidden]

i bought the niacin after the recent post too but have been scared to try after i read up on side effects such as flushing and i think dizziness. i already am a bit dizzy due to other things and don't want more. has it affected you in any way?

[Graham3196]

When I start walking around in the early hours I usually make a cup of coffee or tea, but decaffeinated, and after a short time I can usually sit in front of the TV for a while then go back to bed and sleep. Perhaps decaf would work better for you in that it might allow you to sleep for an extra few hours. I plan to try warm water for a few nights and see what happens.

Cheers

Graham

[Hidden in reply to Graham3196]

That's interesting. Tea or hot water doesn't work for me but I will try decaf as it may not be the caffeine that is doing something helpful but something else in coffee? ..... my husband suggested this actually and I have to admit I didn't pay attention but maybe he's right .... whether I'll admit to this if so I'm not sure but I will admit to the forum!

[Graham3196 in reply to Hidden]

We won't tell him!

[auntiesioux]

Hi Alison, I think I was the one who originally stated the RLS/coffee in the middle of the night thing. I am on a new good cycle now so not needing to do that but....I had many replies supporting the small amounts of warm caffine worked, stop the night time swing dance. I often combined it with a hot shower also. I am just on requip now but seem unable to lower the dose. Every dang medication we take has mild to serious side effects. Requip affects my heart, so...... When I did tell the new neurologist about the coffee, of course his first words were, "Stop drinking coffee." Disgusting, and I am so not OK with Western med. All of us on this site either found the "magic" cure or are looking for it.

I still believe there is a etiology that is common for all of us, big Pharm would rather put our money into treating the symptoms not the cause. If iron, potassium, magnesium, no caffeine, etc. etc. etc. was the 'cure' it would work for everyone. I augmented so seriously in the past two years I finally went to Johns Hopkins Hospital as they said the etiology of RLS was too much glutamate in the brain. The study was done by Dr. Paul Allen, PhD. I forgot to ask how he treated it. GRRRRRR, he was using a form of Gabapentin (which is very hard on the pancreas) or methadone. He came up with the first drug as his funding came from the pharmaceutical company who makes the drug. I am actually glad the methadone did not help at all. I have recently made several changes in my life, just doing one day at a time and continuing on the quest for a common etiology for us all.

[Tamaroy]

I tried for 20 off years to go without medication, it wears you down, Iron and magnesium are a good start even if your iron levels are spot on, cannot try coffee fix as an decaf. Hot baths are good but to fall asleep in one for it to go cold isn't.

I too have noticed that whilst in Hospital(not allowed my normal drugs) or ill at home, RLS doesn't happen, it's just weird.