Specialists in UK?: Hi, I am new to... - Restless Legs Syn...

Restless Legs Syndrome

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Specialists in UK?

samd5555 profile image
44 Replies

Hi, I am new to this forum and I'm sure this has been asked many times but are there any specialists in the UK to be referred to for RLS?

I've had RLS for 30+ years but my symptoms are getting out of control with it happening during the day as well as evening. I take 88microgram Pramipexole in the eve which tends to kick in by bedtime and helps me to get some sleep but have read about augmentation and worry this is happening due to the worsening symptoms. I'm also on HRT and not sure if this is contributing to the effects ...... basically so many questions and just need to talk to someone about a way forward.

Any help would be very welcome, thanks, Sam

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Joolsg profile image
Joolsg

Hi Sam and welcome. There are no RLS specialists in the UK.There are a few neurologists who know more than the basics and they will do phone consultations.

The problem in the UK is that neurologists are behind best treatment as set out in the Mayo algorithm.

If you're augmenting on Pramipexole, some UK neurologists simply increase the dose or switch you to another dopamine agonist, which will also cause augmentation quickly.

Read all you can, starting with the Mayo algorithm and look through the RLS UK website. The top experts in the USA wrote the algorithm and most now refuse to prescribe Pramipexole, Ropinirole or the Neupro patch because of the extremely high rate of drug induced worsening of R and the permanent damage they cause to our dopamine receptors. Dr Andy Berkowski also has an excellent website, explaining why dopamine agonists cause augmentation.

NHS waiting list for Prof. Walker and Prof. Chaudhuri in London are over a year. I think the private list is about 2 to 3 months.

The better informed you are, the better treatment you'll receive.

Useful websites below.

mayoclinicproceedings.org/a...

sleepreviewmag.com/sleep-tr...

relacshealth.com/

samd5555 profile image
samd5555 in reply to Joolsg

Thank you Joolsg for all the information. I will have a look at your suggestions and hopefully see some light at the end of the tunnel. Many thanks

SueJohnson profile image
SueJohnson

HRT can make RLS worse. As Joolsg said pramipexole (and ropinirole) are no longer the first-line treatment for RLS. Gabapentin or pregabalin are. Yes you are augmenting and need to come off it. You can start by shaving off a little of your tablet every couple of weeks. You will have increased symptoms. You may need to reduce more slowly or with a smaller amount. Wait until the increased symptoms from each reduction has settled before going to the next one. You will suffer and as you get near the end you will probably have to wait until you can get an appointment so you can get a low dose opioid temporarily to help you out and so you can get a prescription for gabapentin or pregabalin so you will have something to control your RLS when you are off it. When you are close to your appointment, post back here and we can give you some advice. Or you can print out the appropriate sections from the Mayo Clinic Updated Algorithm on RLS and show it to your doctor and perhaps s/he will be willing to follow it.

samd5555 profile image
samd5555 in reply to SueJohnson

Thank you for this information Sue. I've tried gabapentin but didn't get on with it. I am only on a very small dose of pram 88micrograms (0.088mg) so I'm hoping that withdrawal won't be too bad? I have a GP appt soon so will take in the print out as suggested - thanks. Have read up about LDN so will talk to GP about pregabalin & LDN to see what she thinks. Really useful info, thanks so much

SueJohnson profile image
SueJohnson in reply to samd5555

I'm not quite sure what you mean by didn't get on with it. Did you mean you had side effects you couldn't live with? And if so did you give them at least a few weeks to go away and become less enough you could live with? If so then You might want to try pregabalin. Although they are basically the same drug except you don't need to divide the doses, and the side effects are basically the same, some people find that the side effects that bother them on one don't bother them on the other. The beginning dose is usually 75 mg . It takes 3 weeks to be effective although it won't be fully effective until you are off pramipexole for several weeks. After that increase it by .25 mg every couple of days until you find the dose that works for you. Take it 1-2 hours before bedtime. .Most of the side effects will disappear after a few weeks and the few that don't will usually lessen. Those that remain are usually worth it for the elimination of the RLS symptoms. If you take calcium don't take it within 2 hours. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 200 to 300 mg pregabalin) daily."

samd5555 profile image
samd5555 in reply to SueJohnson

I was on 300mg gabapentin for 4 months and had to come off them as I couldn't concentrate at work. I felt really wiped out on them so yes basically it was side effects that didn't suit me. You are suggesting a much lower dose though so presumably that might lesson the side effects so worth another try. Would I have to come off the pramipexol before starting pregabalin/gabapentin?

samd5555 profile image
samd5555 in reply to samd5555

Also your thoughts on LDN?

SueJohnson profile image
SueJohnson in reply to samd5555

It helps some people.

SueJohnson profile image
SueJohnson in reply to samd5555

300 mg of gabapentin is basically a starting dose. There is a 6 to one ratio between gabapentin and pregabalin. 300 gabapentin is equal to 50 mg of pregabalin. No you don't have to come off pramipexole first.

samd5555 profile image
samd5555 in reply to SueJohnson

Thanks Sue, really helpful

SueJohnson profile image
SueJohnson

Have you had your ferritin checked? Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. When you see your doctor ask for a full iron panel. Stop taking any iron supplements including multivitamins that have iron in them 48 hours before the test, fast after midnight and have your test in the morning. When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. You want your transferrin saturation to be over 20% but less than 45% and your ferritin to be at least 100. If they are not, post them here and we can give you some advice. Improving your ferritin is one of the ways to help with your augmentation.

samd5555 profile image
samd5555 in reply to SueJohnson

My Haemoglobin concentration last month was 126 which for me is quite low as it is usually around 150.

Can ferritin be tested on it's own or is it incuded within the haemoglobin concentration?

SueJohnson profile image
SueJohnson in reply to samd5555

It is not included with the test for haemoglobin. You need to ask for a full iron panel.

samd5555 profile image
samd5555 in reply to SueJohnson

OK thank you that makes sense.

SueJohnson profile image
SueJohnson

Meanwhile some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, carbs, foods high in sodium, foods that cause inflammation, ice cream, estrogen, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin, stress and vigorous exercise. Some things that help some people include caffeine, moderate exercise, weighted blankets, compression socks, elastic bandages, masturbation, magnesium glycinate, low oxalate diet, selenium, 5 minute shower alternating 20 seconds cold water with 10 seconds hot water finishing with hot water for another couple of minutes, hot baths, distractions, applying a topical magnesium lotion or spray, doing a magnesium salts soak, vitamins B1, B3, B6, B12, D3, K2, if deficient, and potassium and copper if deficient, massage including using a massage gun, using a standing desk, listening to music, meditation and yoga.

Many medicines and OTC supplements can make RLS worse. If you are taking any and you list them here, I can tell you if any make RLS symptoms worse and if so may be able to give you a safe substitute.

samd5555 profile image
samd5555 in reply to SueJohnson

Thanks again Sue for this info. I am on oestrogen (prescribed HRT), Ramipril (prescribed) collagen powder (OTC - Ancient & Brave) and take paracetamol & ibuprofen most days as necessary. Will try some of the other things too that I haven't tried before.

SueJohnson profile image
SueJohnson in reply to samd5555

As mentioned estrogen and collagen definitely makes RLS worse for most . The others are fine.

samd5555 profile image
samd5555 in reply to SueJohnson

Thanks for the clarification. I will stop the collagen and talk to GP about HRT too. Lesser of 2 evils!

samd5555 profile image
samd5555 in reply to SueJohnson

Do hay fever tablets have an adverse effect on RLS?

SueJohnson profile image
SueJohnson in reply to samd5555

The newer ones do not - claritin, zyrtec and allegra. The older ones definitely do.

samd5555 profile image
samd5555 in reply to SueJohnson

thank you

Bruxelles profile image
Bruxelles

Hello, what is a massage gun please? I’ve never heard of it and not got a clue what it looks like!

RestlessGuy profile image
RestlessGuy in reply to Bruxelles

Very useful when RLS kicks in when you ate out and about travelling.

Massage gun
Bruxelles profile image
Bruxelles in reply to RestlessGuy

Thanks, are they battery operated? Where can you buy them?

RestlessGuy profile image
RestlessGuy in reply to Bruxelles

Most operate on rechargeable batteries via USB-C socket.I bought mine in Japan but Amazon also has a selection.

Bruxelles profile image
Bruxelles in reply to RestlessGuy

Thankyou, I’ll have a look on Amazon.

67Waterman profile image
67Waterman

Hi Sam. You poor thing. I finally "found" Professor Walker at the Queen Square Neurology Hospital (only through trawling the internet) ... but as Jools said below, I had to wait a year for an appointment on the NHS (and basically I told him what I was taking (based on what I had learnt here on this site through Jools, Sue and others and through the Mayo Clinic Algorithm) and he basically said "ok". And that was that. I get a follow up phone call with him after six months, but if I want another face to face, I have to wait another year ..... Jools is absolutely right in saying the better informed you are, the better treatment you'll receive. YOU have to tell THEM what you want and why .... amazing really ....

Bruxelles profile image
Bruxelles in reply to 67Waterman

My GP doesn’t take any notice, neither does the neurologist! So I don’t go back to the Neurologist, he wouldn’t give me Gabapentin and my GP who I specifically told I didn’t want Setraline because of RLS has prescribed Sertraline!

Joolsg profile image
Joolsg in reply to Bruxelles

Typical!

samd5555 profile image
samd5555 in reply to 67Waterman

So glad I've fond this forum as have lots of notes to take to the GP appt! So glad I have a brilliant GP now who is very interested in RLS and seems to want to learn about it. We shall see! Thanks again all

Simkin profile image
Simkin

To be honest Sam I have found this forum far more helpful than any neurologist. My GP now says "what do your forum friends think"!?I too have had RLS for 30+ years and have tried every medicine & cure going. It really is trial & error as each person reacts differently.

At the moment gabapentin and oxycodone is helping me but I think we would all agree that sadly RLS seems to get worse with age.

Sue, Jools & others on this site have helped me enormously.

Bruxelles profile image
Bruxelles in reply to Simkin

I agree. I’ve learnt so much here. Thanks to all

Birdland profile image
Birdland

Unfortunately HRT can be a major RLS trigger. It was for me. And of course augmentation is a horrible thing. It’s not easy to come off of dopamine agonists but with perseverance it can be done and you’ll be happy you did.

samd5555 profile image
samd5555 in reply to Birdland

Thanks for this, really helpful advice.

Moonwalker1967 profile image
Moonwalker1967

I had to go off HRT and stopped taking Naxopren for arthritis. It was a big trigger. Hospital neurologists are able to prescribe Gabapentin or Pregabalin. "Nag" your GP to get a referral to a neurologist. I had to wait 6 months for mine in Sheffield hospital. It was well worth it as he's been able to prescribe those and the follow up is a repeat prescriptions from your GP.

I hope the above helps.

Sunny070 profile image
Sunny070

Dr Robin Frackrell who is based in Bath.

ChrisColumbus profile image
ChrisColumbus in reply to Sunny070

I'd not noticed this recommendation before so looked him up (although looking back I see you've mentioned him previously):

Robin Fackrell, Consultant Physician and Specialist in Parkinson's Disease and Related Disorders at the Royal United Bath NHS Foundation Trust.

Also in private practice:

circlehealthgroup.co.uk/con...

ChrisColumbus profile image
ChrisColumbus in reply to ChrisColumbus

Personal recommendations can be helpful: what was it about Dr Fackrell's treatment that particularly helped you?

Kaarina profile image
KaarinaAdministrator in reply to ChrisColumbus

Dr Fackrell's name was added to a short list recently that I have of recommended medics suggested by forum members.

Sunny070 profile image
Sunny070 in reply to ChrisColumbus

I saw him a few years ago and found him very well informed and helpful. He is certainly worth seeing if you live in the west of England.

ChrisColumbus profile image
ChrisColumbus in reply to Sunny070

Thank you. And I see that Kaarina had already added Dr Fackrell's name to her list of recommended medics suggested by forum members.

Bairnie profile image
Bairnie

I don’t know of any specialist, unfortunately. It sounds as if you’re definitely augmenting and you will need to come off dopamine agonists. I found HRT made my RLS much worse. The Facebook RLS SUCKS! Is fabulous for information on this condition and has files from Johns Hopkins for info on how to deal with coming off dopamine agonists. It’s mostly people from USA but still worth joining for their super advice.

samd5555 profile image
samd5555

Thanks Bairnie, I didn't make the HRT connection until I joined this group so your reply is really helpful. Did you stop the HRT?

Louless9 profile image
Louless9

I’d like to know as well

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