Hoochy- melatonin triggers RLS so avoid.As you were on DAs & augmented, gabapentin and pregabalin often fail.
As you are suffering so badly, I think you need to see a UK specialist familiar with refractory RLS. Profs Guy Leschziner or Walker or Dr Robin Fackrell or Dr Chris Murphy.
I think you need to ask for a long half life opioid- Buprenorphine.
All those doctors have already prescribed Buprenorphine to their patients.But sadly, as NHS waiting lists are so long, private is best option. It will cost around £350 BUT check with your GP surgery first as to whether they will prescribe IF neuro recommends. There are a few cases where the GP refuses to prescribe even after neurologist recommends.
Prof Leschziner is at Guys London, Ptof. Walker is at Queen Sq London. Dr Robin Fackrell is in Bath and Dr Chris Murphy is in.Salford.
Could you elaborate on pregablin often failing? I am weaning off a DA having augmented and transferring to Pregablin as my main treatment for RLS so I fear I am in this category.
There has been a research study showing that gabapentinoids can fail if the patient was previously on dopamine agonists.The RLS is then regarded as refractory and low dose opioids are needed.
Some experts believe it's permanent damage to dopamine receptors caused by years on DAs.
We would need billions more in research and further studies to find out exactly why.
I spent 5 years suffering badly on 150mg pregabalin and 25mg Oxycontin. My RLS was still very severe (38/40). The top RLS clinic in the UK told me repeatedly there was NOTHING else I could do and 3 hour's broken sleep was the best I could expect. I emailed the wonderful Dr Buchfuhrer and he told me that was totally incorrect. So I followed his advice and the advice on here and pushed for Buprenorphine. So don't waste more than 4 months on pregabalin. If it doesn't work for you at 200/250mg after4 months, it's probably not going to work.
I wouldn't say it often fails but she is correct that after many years on a DA, especially on a high dose, the dopamine receptors may be damaged and then gabapentin and pregabalin might not work. BUT one should not assume that is the case unless they have given it at least 3 weeks to become fully effective and the withdrawal symptoms have settled and then increased it to the usual effective amount (200 to 300 mg pregabalin or 1200 to 1800 mg gabapentin). And if it helps at all the receptors haven't been damaged and one might need more.
I have just reduced from 1.5 mg to 1.25 mg of Ropinirole daily supplemented with 30-45mg of codeine plus 300-400mg of Pregablin daily. I will keep reducing the Ropinirole to zero and then find out if the Pregablin can take the strain🤞I have previously been on 4mg per day of Ropinirole for 9 years so her is hoping that my dopamine receptors are still functional 🤔
Lots of insomnia vehicles to try besides melatonin. Try some of the "sleep" teas - Tulsi Sleep, Sleepy time, etc. Also a supplement NAC (N-acetyl-cysteine) can help with balancing neurotransmitters. Inositol, Taurine, L-theanine, and Ashwagandha can help also. When I did use melatonin I used a 2mg sublingual tablet broken into 4 so it was 0.5mg. It helped to initiate sleep. Just keep track of what you're taking and when to gauge effectiveness. A go-to supplement for sleep has always been Magnesium, specifically magnesium glycinate. Most magnesium was paradoxical for me - excitable and not relaxing at all. See this article. I have started the magnesium glycinate in the morning (500mg) - so far, so good.
I assume you are taking Apixeban for the Atrial fibrillation? It does not have a relationship as far as I am aware with restless legs. I think you need some specialist help. I take Magnesium tablets at night for my RLS but it does not work for everyone.
Just to add, that I am in the UK and Robin Fackrell is in Bath, but you have to pay. He suggested Targinact which is an opiod that is licensed for rls in the UK. It works very well for me. It is slow release and lasts through the night .
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Trying to lower dose of roponirole and affecting sleep
Insomnia
insomnia
