calameo.com/sleeplabmagazin...
Dr Berkowski is one of the top US experts on RLS and he firmly believes dopamine agonists cause permanent damage to dopamine receptors. This means pregabalin and gabapentin often don't work for us, nor do iron infusions.
It may be helpful to show your GP or neurologist, especially if they keep insisting dopamine agonists are first line treatment in the UK, with no known side effects!
Great resource Joolsg thanks for posting also some good information on sleep apnea
excellent Joolsg !
Absolutely happened to me. Augmented March 2021. Neither Gabapentin nor Pregabalin help. Iron infusion raised my ferritin to 1050 but I am still symptomatic. Buprenorphine helps. Still cannot sit for long and awake every 2 hours. Professor Walker says ' It happens' ferritin was 101 when I had the iron transfusion.
You probably checked your ferritin before 8 weeks had passed from your iron infusion as it can measure very high if you do it before 8 weeks.
Thank you for posting.
I don’t believe Pregabalin is a dopamine agonist, or have I misunderstood you? Either way, it didn’t work for me. Tramadol was the real problem for me and has caused permanent augmentation of my RLS symptoms, and for it to spread to other areas I never had it before.
Pregabalin is NOT a dopamine agonist. It's an Alpha2Delta ligand.The article talks about dopamine agonists causing permanent damage to dopamine receptors and that damage is why the next line of drugs, pregabalin and gabapentin, do not work for us.
That's what I meant when I said,'This means pregabalin/gabapentin don't work'.
Tramadol is the only opioid that also causes drug-induced worsening of RLS.
Have you asked for another opioid? The long half life opioids ( methadone and Buprenorphine) are highly effective for RLS.
Ah, that makes sense. Since coming off Pregabalin back in early 2020 I’ve not been prescribed anything as, to be honest, I’d given up and with the lockdown etc it was pretty much impossible anyway. Just been suffering. Then I was prescribed Co-codamol for diverticulitis and discovered that two capsules stop my RLS within an hour of an attack coming on. So for the last few months I’ve taken a couple either at bedtime or during the night when I’m struggling. Just frightened that codeine might have the same effect as Tramadol, but when the co-codamol is there and my RLS is torture, and I know it gives relief, I give in.
Co codamol doesn't increase severity of the disease. You could ask your GP for 30mg codeine instead of co codamol.
That’s good to hear. TBH I absolutely hate taking medication, even more so since my experience with Tramadol which was prescribed for severe sciatica requiring surgery. Keep meaning to speak to a GP. The information not so long ago was that Tramadol didn’t cause augmentation, so I think you’ll understand if I’m reticent about taking codeine just in case. That magazine article was very interesting. I’m guessing Tramadol acted like a dopamine agonist for me.
I agree with Joolsg. Codeine doesn't make RLS worse so I wouldn't worry about asking for more if it if you need it.
Exactly. This study from 2007 confirms that Tramadol causes RLS worsening. It behaves in a similar way to anti depressants, with serotonin reuptake Inhibition properties. Other opioids don't work in the same way, so won't cause worsening of RLS.researchgate.net/publicatio...
Codeine can be very effective and most people stay on the same low dose for a long time. You might even be able to use it on an 'as needed basis' if you don't get RLS every night.
Now I’m super confused Joolsg. My doctor told me to just keep taking the Gabapentin 2400mg!! 2 closer to bedtime!! I was abruptly stopped of my opiates! Which were and have been a Godsend since I started taking them 20 years plus ago!! Not just for RLS but pain from several different arthritis’s !
?? I'm confused. What are you asking?Opioids are highly effective for RLS. But, tramadol is the only opioid that works in a similar way to dopamine agonists and causes worsening of RLS for some people.
I use Buprenorphine and I have zero RLS.
Dr Winkelman's opioid study confirms that low dose opioids are highly effective for RLS and do not cause addiction (unless there's a history of abuse) or tolerance ( the need to increase the dose to achieve the same relief of symptoms).
The most common opioids in his study are methadone and oxycodone.
I’m confused by your comment joolsg?? Dr Berkowski is a big advocate for iron infusion and I’m pretty sure Gabapentin to. What he’s not a proponent of is the pramipexole and Ropinerole.(dopamine agonists/ ligands whatever) I believe. Correct me if I’m confused..🫤
Perhaps I could have been more clear. I've spoken to Dr Berkowski via Zoom. He believes years of using the poisonous dopamine agonists ( Pramipexole, Ropinirole, Rotigitone) causes permanent damage to our dopamine receptors.
That damage alters the way our dopamine receptors work with Alpha2Delta ligands ( gabapentin, pregabalin, horizant) so they are not as effective for us.
Also, damaged dopamine receptors mean that our brain cannot take up the iron from iron infusions.
It's why many of us did not respond to iron infusions and also why gabapentin or pregabalin just didn't work to settle RLS after we stopped the dopamine agonists.
Dopamine agonists and their aftermath - A Survey
Dr Andy how to Taper off Dopamine Agonists and telling people they should not be prescribed. 
Medscape article on RLS
