Hi fellow RLS people. Can anyone suggest a private neurologist in UK preferably South of England who will prescribe opioids? My doctor didn’t want to prescribe codeine (although had done so in the past). In the past I have also tried DA, gabepentin, clonazepam, amitriptiline, and some sleeping tablets. Currently on pregabalin and not working. Dr has pushed me to try amitriptiline again saying I didn’t try it long enough or at a high enough dose last time. Have taken for last 2 nights and feel terrible. I have contacted the secretaries of Prof Ray Chaudhuri and Prof Matthew Walker and received no response (sent last week). Have completed contact form for Dr Christopher Murphey and no response. Contacted secretary of Dr Robin Fackrell and received response saying I need gp referral and he will consider taking me on or passing to someone more appropriate. As he is a geriatrician I am not sure I am old enough (53) and don’t want to be passed onto someone who has no knowledge of RLS.
I am aware my ferritin levels are not high enough so I am taking prescribed iron tablets and keep getting levels checked. Been told meds probably won’t work until ferritin rises but been trying for 6 months and coming to end of tether
Really grateful to have this group as no one in my life understands what I’m going through right now.
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Dr Novraj Dhanjal The National Hospital for Neurology and Neurosurgery. recommended by Ephemera who said he asked GP to prescribe buprinorphine
Dr. David O'Regan at the Sleep Disorders Centre at Guy's and St Thomas' Hospitals, and at Sleep London (private practice based at 77-79 Wimpole St., London, W1G 9RU).used by Greencatgirl
Both will prescribe or recommend to your GP to prescribe opioids. You will probably have to pay to see them privately, You can message the members who recommended them to find out more
Sue - I was formerly Greencatgirl. Just to say Dr O'Regan is lovely but will not prescribe opioids (apart from Targinact).
Ali - I'm in my late 50s and saw Dr Fackrell. He was up to date with the latest RLS studies from the States and readily prescribed Buprenorphine. I was asked for a GP referral and this my surgery readily provided. They wouldn't then take over prescribing the Buprenorphine (red listed in my London borough), but I was able to register with a out of area practice who were happy to help.
Thank you for responding. I was impressed that Dr Fackrells secretary replied so quickly so he is still on my list. I think most of the meds that have worked for people on this thread are red listed where I live. I will fight that battle later 😳
I saw Dr Fackrell a year ago after my GP referred me at my request and had no problem with him. I was 60 then. I was looking for an infusion but he did a thorough assessment and made sure I was aware of all the options so he won't just follow what you are looking for. I didn't want medication until I absolutely have to which he knew but still made sure he did a complete job. The only downside was that he said it should be relatively easy for me to get an infusion in the NHS which turned out to be completely untrue, but that's not his fault.
Amitriptyline is known to make RLS worse as you have found out. If your doctor prescribed in for depressant ask for trazodone. If for anxiety ask for buspar.
My understanding is the Nice Guidelines which I can't access because I am in the US says "A weak opioid (such as codeine), taken intermittently or regularly (depending on symptoms), is an alternative, particularly for people with painful symptoms of RLS" You might want to check that and show your doctor.
Thanks Sue. Dr prescribed Ami for RLS and I was in such a bad way when she suggested it (for the umpteenth time) I reluctantly agreed. At a previous apt I had already pointed out nice guidelines and she prescribed codeine. This time she said they were only for short term use so wouldn’t prescribe them. It was at this point I gave up and decided I really needed a private apt with a neurologist as dr may actually listen to an expert (rather than me the patient). The sad thing is codeine doesn’t even work that well but got the impression if I asked for anything stronger I would be seen as a drug abuser.
Stop Amitriptyline immediately. It WILL worsen RLS. Your GP is SO WRONG.And ask your GP to read RLS-UK website, NHS and NICE guidance, all of which make it clear that Amitriptyline and other anti depressants worsen RLS.Sadly, the waiting time, even privately, is long.
Persist with Professor Walker and you will get through.
Have you checked whether Buprenorphine is red listed in your prescribing area? Ask your pharmacist.
If it is, you will need the neurologist to recommend Buprenorphine and agree a 'shared care' arrangement with the neurologist.
Thanks Joolsg I am so upset because I sent her the information you mentioned and it was ignored. I will stop taking the Ami and pretend I took it for longer just to appease her. Only been on it for 2 days and getting RLS in arms and at times of day I don’t normally get it. I now remember why I only tried it for 3 days a few years ago. I think Buprenorphine is red listed so will take on board what you have said about shared care.
Do try to educate her. Consider a complaint to the practice manager.It is BASIC RLS knowledge.
Sadly, as GPs aren't taught anything about RLS, they don't know how to treat it.
There are 4 simple steps.
1. Full panel iron blood tests & raise serum ferritin above 200ųg via pills every other night or iron infusion.
2. Review & replace ALL trigger meds (all anti depressants ( Amitriptyline), sedating anti histamines, statins, beta blockers. PPIs).
3. If 1 & 2 don't help, start pregabalin or gabapentin at night only.
4. If 3 doesn't work after 3 months, switch to a low dose, long half life opioid.
Ta da.
If every GP followed this, and stopped prescribing dopamine agonists and Amitriptyline ( which is for NERVE pain) patients would be in a much better place.
I have tried so many times but a problem I have is she contacted local nhs neurologist who wrote a letter saying “I see you have tried amitriptyline in the past as well as gabepentin and clonazepam. These are really the major treatments for RLS”. As a GP I understand how she would listen to a neurologist and not a mad, crying and hysterical patient who hasn’t slept in months asking for opioids. I will find a private neurologist to back me up and maybe then she will listen.
If you can't get buprenorphine or methadone be aware that most of the others last only 4 to 6 hours and need to be taken that often or you will have mini withdrawals. If you are prescribed one of the others be sure you are given enough to take them that often
The ignorance & negligence is absolutely terrifying.These are highly trained neurologists, yet a simple google search will bring up ALL the evidence & research articles showing that Amitriptyline is Kriptonite for RLS.
I get angrier by the day at their wilful negligence.
No other profession would get away with such lack of updates to knowledge.
Lawyers & Accountants have to do hours of continuing education & research to keep up to date.
But neurologists simply sit on their backsides.
I am so angry on your behalf.
File a report via Yellow Card Scheme and state that Amitriptyline has caused RLS worsening and send copy to GP.
The more of us that do this, the more warnings will be given.
Oh, and do name & shame the neurologist so we can add to our blacklist!
I was taking 225mg Pregabalin with clonazepam. Tried for few months but still waking up 4 times a night along with woozy spaced out feeling in morning. With codeine I would wake up twice a night which is why I went back to gp to request.
Ferritin taken at several intervals whilst on iron. 65 then 75 then 51. Having it checked again in 5 weeks time (will follow advice seen on this forum).
Iron is ferrous fumerate 322mg originally taking every other night but now taking on, on, off, on, on, off with vit C.
I did request iron infusion to speed things up but local neurologist refused saying 75 was ok (but now it is 51). I work for The NHS and as an employee and patient feel it is broken 😞
Try private clinic. Prof Richards at the Iron Clinic Harley Street will do iron infusions for around £800. A lot, but he may be able to offer instalments.
What was your experience with gabapentin? How much did you take?
The iron you are taking is fine. Taking it every other night is the best way to take it as is taking it with vitamin C. Keep taking it while you wait to hopefully get an iron infusion. Here is my normal advice:
If you take blood thinners, iron binds with blood thinners, potentially reducing the effectiveness of the blood thinners and of the iron so check with your doctor.
Take it at night at least 1 hour before a meal or coffee or tea and at least 2 hours after a meal or coffee or tea since iron is absorbed better on an empty stomach and the tannins in coffee and tea limit absorption. Also take Lactobacillus plantarum 299v as it helps its absorption. If you take magnesium, calcium or zinc even in a multivitamin, take them at least 2 hours apart since they interfere with the absorption of iron. Also antacids interfere with its absorption so should be taken at least 4 hours before the iron or at least 2 hours after. Don't take your iron tablets before or after exercise since inflammation peaks after a workout. Don't take tumeric as it can interfere with the absorption of iron. If you take thyroid medicine don't take it within 4 hours. It takes several months for the iron tablets or iron infusion to slowly raise your ferritin. Ask for a new blood test after 3 months if you are taking iron tablets or after 8 weeks if you have an iron infusion.
Hi sue. I can’t remember dose of gabepentin but took 2 capsules a night. It worked for a few months but then would only work for an hour or 2. If I could go back in time I would do so and request an increase in dose. However I stopped gabapentin and went on to ropinirole. I had the best sleep ever for a few months then augmentation. I then chose to come off rather than increase dose. Without a doubt one of the worst experiences of my life.
Hi AliI paid £200 to see a local Neurologist whose secretary assured me he was an expert on RLS. The first thing he wanted to prescribe was Pramiprexole. I had just Augmented on this drug after being over prescribed for 16 years. Complete waste of time and money..I then contacted Professor Matthew Walker who telephoned me and was marvellous. He authorised my gp to start Buprenorphine. I've been under his care ever since for the last 3 years. He has arranged a Sleep Study and an Iron infusion for me in London. I live in the East Midlands.
I'm stunned by this! I've been chasing Prof walker for over a year. No follow up apt, no sleep study like he promised, no offer of change in medication other than dopamine agonists and oxy both I'm not prepared to take. He's even been rude in the apt and so has his secretary.
Sorry for the rant but this makes me furious. I've been suffering with PLMD/RLS for decades and I barely cause a stink about it. The second I did I've had silent treatment or rudeness from those I've engaged with.
It's great you're being treated so well though - we all deserve good treatment!
That's okay! You contacted Prof Walker? It's strange how he's great for some patients but for others he's not so great. Do you mind me asking who you've got an apt with? I'm looking myself.
Dr Christopher Murphey at Alexandra Hospital. It’s near Manchester so a four hour drive away but I was desperate. I had contacted several other neurologists but was either ignored, expected to pay over £1000 for one apt or there was too long a waiting list.
Oh gosh I'm so sorry, that's awful! I really hope they work out for you - good luck! Do let us know how you get on and thanks for sharing, it's very much appreciated.
I said I would reply so here is an update. Saw neurologist and he recommended various treatments including the buprenorphine patch and medical cannabis. GP agreed to prescribe the patch so am on lowest dose but can increase over time. Not worked yet but only put on last night! Not suitable for medical cannabis as have family history of psychosis so am at a higher risk of developing this too (apparently 1 in 3 chance). There would also have been costs involved as cannot get on NHS for RLS.
As a fellow sufferer I think everyone on this site will say Amitriptyline will make your RLS worse. I am sure that no doctor will just prescribe codéine without going through your case with you. Professor Walker is very knowledgeable but you would need to make an appointment with him which could be costly,but, if you can afford it it’s probably worth it. You will get lots of help on here.
Thank you Gill. I have made efforts to contact prof Walker and hope to hear something next week. I am relieved so many have responded to say amitriptyline makes it worse as knew it wasn’t all in my head. I was made to feel I just hadn’t given it long enough or a high enough dose to work. I only took 2 doses of 10mg and my whole body went into RLS mode. Dr is expecting me to go up every 3 days to reach 50mg a day.
I live in the South West, I'm taking targinact and find it very effective , it is licensed in this country for rls. Amitriptyline definitely makes things worse in my experience. Dr Batzu in London under Prof Chaudhuri is excellent but you will have to wait a long time for an appointment.
I am being seen at the sleep disorders clinic at Guys Hospital. The waits are long but I think the care they give is good. It was Rav Chaudhuri who started me on dopamine agonists many years ago.
Thanks for reply and recommendation. I did contact Ray Chaudhuri secretary for apt at £400 but was told wait list was long but could get an apt at Dementech with him which is £1200! I have a couple of other recommendations that I’m going to pursue but thanks again for replying.
In my case I have a restless lower back, especially at night and I am up and down all night. But it feels exactly like Restless Legs and is probably a nerve. I was prescribed Pregabalin for my restless back BECAUSE it was like restless legs. It worked brilliantly at first but then not quite so well. By this time I had discovered this website and when I heard that it frequently led to a kind of reversal, I came off it at once.
Since then I have tried various pills but none of them worked. However I was given Nortriptyline and it MAY be lessening the symptoms a bit but I won't be sure till I have been on it for longer!! I take a 50mg dose each night.
Hi Searcher55, I did look into this but the nhs website says “You can buy the lowest strength of co-codamol (8/500) without a prescription but only from a pharmacy. The higher strengths (15/500 and 30/500) are only available on prescription from a doctor”. The strength I had on prescription was 30 (total of 60mg as took 2 tablets). Even this would only work for 2 hours so thought it would be pointless trying OTC meds.
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I need a rls specialist who isnt afraid to prescribe opiods in texas
need new neurologist 
Drug free and waiting for neurologist
B12 and almost off Requip. 
Advice Needed re Serum Ferritin Levels
