Had my neurologist appointment yesterday...

[RLSofManyYears]

Well I met my consultant at a Glasgow hospital yesterday after about 2 years (I'm on the maintenance list now). I came armed with lots of paperwork to give him but didn't need to hand it out as he knew a lot. He was particularly pleased about the change to the NICE guidelines to drop the DAs and use Pregabalin/Gabapentin. I had tried lowering my Pregabalin from 400mg to 350mg but he said that Pregabalin was the drug that really did help and did not have any addiction issues like opioids (I'm on 3 x 200ugm Buprenorphine).

I also discussed Melatonin with him as he had previously prescribed me 2mg tablets. I did give him the 1999 paper on lower Melatonin doses (less than 1mg) but he said that the lowest dose available was the 2mg one. So no possibility of lower dose via the NHS and none over the counter. However, after the ubiquitous Google search, I have now ordered a liquid form of Melatonin online. 4ml (or 4 droppers from the bottle) is equivalent to 1mg Melatonin and so I think I can try 0.2mg as being about 1 drop from the dropper (I'll need to use scales for this though!). A bit of a faff but I'll report back in a couple of months with the results of this trial.

So finally, my consultant is completely aware of my condition but together we have tried all the options and there is very little else to do. I know that many folk are getting nowhere with their GP or Neurologist but I would like to state that my surgery and neurologist have done all they can for me and I'm sorry for those whose experience is totally the opposite.

[Joolsg]

Great that he was aware of the new NICE cks guidance. However melatonin is a trigger for the vast majority of RLS patients.And Buprenorphine is not addictive for RLS patients. Opioids do cause tolerance and addiction when used for pain relief- but not for RLS. Dr Winkelman's opioid study is proving this. Madlegs, Lotte & I have been part of the study for the last 6 years. We haven't become addicted to our opioids. Nor tolerant. We're still on the same dose.

But- it's great that the latest news is filtering out. AT LAST!

Who did you see?

[RLSofManyYears in reply to Joolsg]

Joolsg, I've PM'd you with the name and hospital.

[RLSofManyYears]

Oh, I forgot, he's getting my bloods checked again. Full set of tests!

[DicCarlson]

On occasion I use a 1mg sublingual melatonin tablet and break it into 4 - so it's 0.25mg. Also a time release 2mg. Mostly it leaves me groggy in the morning. I have also seen a melatonin tea with 0.5mg in it.

[SueJohnson]

Who did you see as I keep a list of good doctors?

[Islay9]

Tw99 here is someone in Glasgow 😊

[Islay9]

Great news! May I ask, who gave you the Buprenorphine? GP or Neurologist? (Asking as a fellow Scot, cause it’s good to know that someone can get it here!)

Be careful with the Melatonin as it can be a trigger but you’ll soon know (in my experience) so can come off it if needed.

I personally am not convinced about your consultant’s advice re Pregabalin. I’m on 450mg and think it just makes me dizzy, perhaps helps with sleep a bit, but not the RLS, it’s the dihydrocodeine that makes that difference for me.

You know your body best. And as the others have said, Buprenorphine has a great track record.