Caffeine / pregabalin / conflicting advice

[67Waterman]

I am under Professor Walker at Queen Square, a specialist for RLS. I am on Pregabalin (300mg before bedtime). But also on Citalopram for HRT, which he said should be switched to Bupropion as it worsens RLS. Unfortunately he did not give an amount, so my GP had to phone the "hot line" to a bank of neurologists to ask. She got through to Doctor Nick Silver, Neurologist, also specialist in RLS.

He says that Citalopram is not a problem, that I am taking far too much Pregabalin, and that if I cut out ALL caffeine, then whilst the RLS may worsen in the next couple of weeks, after that, 50% to 60% of his patients no longer have RLS.

So you have two incredibly intelligent and specialised professionals in RLS both giving totally different views. I do not think we stand a chance really ......

[Rayme]

hi Waterman, that's so confusing to get differing advice. I took Pregabalin, which works so well for many, but sadly even at 350mg it didn't help, just side effects. I've kept a very detailed Excel sheet - food sleep exercise and everything else I could think of such as coffee sunlight etc since 2021 when my RL started to get really bad. Included stress, social life, etc. There are some influences that made it worse such as stress. For me coffee wasn't a problem, but as we say, we are all different. I think inflammation made it much worse too as at that time I developed osteoarthritis. All the best with the process of finding what works best for you.

[Madlegs1 in reply to Rayme]

Coffee does not cause rls.

But does cause insomnia.

This is a myth so deeply embedded in medical psyche, it will probably never be changed.

I have explained the origin of the myth elsewhere.

[SueJohnson in reply to Madlegs1]

It does not cause RLS but for many people can make symptoms worse. And for many people it actually helps RLS. Go figure!

[67Waterman in reply to Rayme]

Thank you Rayme. I also do not think that coffee is a trigger for RLS, especially as I only have two cups in the morning (which I definitely could not do without!). I am so sorry about your osteoarthritis ....

[Fingerandus in reply to 67Waterman]

i dont have any coffee but i do take thyroxine, beta blocker, sifrol, lyrica i have codeine and tamazepam i do not take them together of cause. ive stopped lyrica in the last week cutting down on sifrol but i cannot sleep and my restless legs are terrible ive also tried citalopram no good for me ..

[SueJohnson]

Citalopram may make RLS worse. Bupropion doesn't. As far as coffee some find it makes RLS worse and some find it helps their RLS.

[67Waterman in reply to SueJohnson]

Thanks Sue ... that is what Prof Walker said ... so I am stopping the Citalopram this morning and seeing what happens. Coffee is what makes me function and happy in the morning ... I could not give that up for anything (grin!), Warm regards as always

[Joolsg]

Most neurologists know sweet FA about RLS. Prof. Walker is one of a small handful who does know more than the basics.

300 mg pregabalin is NOT too high. It's clearly set out in the Mayo algorithm. Max dose for RLS is 450mg.

Citalopram DOES worsen RLS for the overwhelming majority of RLS sufferers. Most anti depressants trigger or worsen RLS.

All set out in the Mayo algorithm.

So, Prof. Walker is following the guidelines in the Mayo algorithm, written by the world's top RLS experts.

Doctor Nick Silver needs to update his knowledge, as he is clearly very out of date. Sadly, there are too many neurologists out there like Dr Silver, who are giving incorrect advice.

Oh. And the advice about coffee is also misleading and, quite frankly, gaslighting and insulting. To say 60% of his RLS patients have no RLS by cutting out coffee is just unbelievable. He needs to read posts on this forum and the nany help groups on Facebook.

I'll make a note NEVER to recommend Dr Silver to any RLS patient.

Coffee actually improves my RLS. Food and drink triggers are different for everyone.

[67Waterman in reply to Joolsg]

Wonderful Jools - perfectly said - thank you x

[Kaarina Administrator in reply to 67Waterman]

I take it this Dr Nick Silver is based at Spire Cheshire Hospital/Spire Murryfield. Although recommended by a member I too shall delete his name from our very short list of recommended neurologists,

[Joolsg in reply to 67Waterman]

Hopefully your GP will follow Prof. Walker advice and keep you on 300mg dose of pregabalin & try the bupropion. It is utterly terrifying that there are neurologists in the UK still so out of date on RLS. GPs will defer to their advice.

We really are on our own and have to push for the best treatment. The top UK RLS neurologist recently told a patient that he doesn't recommend iron infusions for RLS because of the high risk of anaphylaxis/death.

That is so wrong and outdated. The newer iv iron formulations have very low risk!

Just thinking about all those patients who could have been treated quickly & effectively with an iron infusion and instead they've been put on Dopamine Agonists.

Hopefully, this year we will get through to NICE, the NHS and RCGP and ABN that they have to teach RLS to all medical students and update all guidance to follow the Mayo algorithm.

[rkatt in reply to Joolsg]

I totally support what Jools says. Most RLS sufferers recovering after giving up coffee! Ridiculous, honestly. SSRI's exacerbate RLS in most cases, sometime savagely. All Silver needs to do is have a quick look at RLS UK's website, or the US equivalent. No much to ask.

[Merny5]

Two years ago I switch to bupropion from Citalopram and it made a difference in my symptoms.

[coldfeet7]

There are compounds in coffee (caff or decaff) that are opioid receptor antagonists. So it is not just caffeine. I stopped all coffee and just drink tea (caffeinated - I should probably go herbal). It definitely helps with my PLMD.

pubmed.ncbi.nlm.nih.gov/629...

aminotheory.com/coffee/

I used to see 2-3 bouts nightly of PLM (45-90 minutes each) in my thumb wearing my Wellue O2 ring's motion sensor. (You have to really change the scale in OSCAR to see them, because they are so slight, but they are very periodic). I relayed by suspicion to my sleep door and my subsequent PSG showed 80+ PLMs/hour with 1/4 of them resulting in arousals. She said "well, you were right".

After stopping coffee I see bouts every other day or so and usually only one a night. So I'd say at least a 50-70% reduction in my hands.

I tried the O2 ring on my big toe, but it was too tight and I woke up with a screaming big toe that was probably a little starved of circulation. ;-(

Wish I could find a reasonably priced device that specifically was designed to measure PLM in my legs/ankles at night that would import data into OSCAR. That would be an excellent way to do personal trials and really see what helps. I am thinking about mounting Wellue's baby ankle O2 monitor on a larger strap to capture my leg movements.