RLS specialist UK

[Ephemera]

Urgent request for RLS private specialist in UK. Husband has been pacing around the house and roads 24hrs a day for the last 4 days with no sign of sleep. Too much pain as soon as he sits or lays down. Pain is like having a tourniquet around thighs and movement in legs and feet. Cannot speak to Prof Walker secretary until next week to book appt. Tried Zopiclone and it made it worse and turned him into a zombie walking around for 12 hours. HELPFUL NAMES please 🤞🤞

[ChrisColumbus]

Zopiclone is usually regarded as OK for RLS sufferers but your husband may need something stronger. Hopefully someone else will have some other suggestions.

There are not that many RLS knowledgeable specialists in the UK and they are probably in high demand.

Kaarina : do you have other contact details for people recommended by forum members?

[Joolsg]

There aren't any experts sadly. There are a few neurologists who know more than the basics but their waiting lists are extremely long. Over a year.Prof. Walker knows more than others, so it's probably best to wait to see him.

In London, there's Prof. Chaudhuri's team at King's College London, but be wary, as they often recommend the Neupro patch, another dopamine agonist, after someone has had serious problems on Ropinirole etc. The waiting list is also long.

Can you take a video and show it to your GP and ask for a low dose opioid?

Targinact is often given by GPs to control severe, painful RLS.

Try showing your GP this article.

It's unacceptable to leave your husband suffering so badly when there are treatments that can help..Also ask GP to read the RLS UK descriptions of RLS and the meds chart.

rls-uk.org/medical-treatments

nice.org.uk/advice/esnm67/c...

[Kaarina Administrator]

I am afraid I cannot guarantee the following are ALL HELPFUL names but they have all been recommended in the past by forum members. We tend to recommend Prof Walker now but as you say you cannot speak with him until next week.

Lister Hospital, Stevenage, Herts Sleep clinic recommended by username dickJones August 2022

Guys Sleep Disorder Clinic - Dr Eliza Sany and Dr Wasserman Berkovitzar - transferred username Doversoul from ropinirole to pregabablin

Guy Leschzinar - London Bridge/Guys

Prof Adrian Williams - Guys

Prof Chaudhuri - Kings College

Prof Bhatias's Clinics- Inst of Neurology

Mr Muza Rexford - London Bridge Hospital (specialises in sleep disorders and RLS)

Dr Angus Nisbet - specialises in Movement Disorders - Goring Hall Hospital Worthing, Sx.

Dr Robin Keith Fackrell - Consultant Physician - Bath Circle and Royal Bath. Recommended by Dotmowatee in 2022

[Pippins2]

Hi so sorry to read this ,unfortunately I was in the same situation years ago .I was hospitalised after 52 hours without sleep and it was classed as a medical emergency. I was fainting and told I could go into convulsions. At the hospital they knocked me out with massive doses of morphine .If your husband still hasn't slept I would ring emergency services .

[Ephemera in reply to Pippins2]

Unfortunately in the UK they do not seem to treat not sleeping as an emergency, just give you sleeping pills and hope they work.

[Greenseagirl]

Just checking he hasn’t changed or reduced any other meds recently? (Sometimes withdrawal responses can be misdiagnosed as a worsening of an existing condition, and reinstating the medication to then taper more slowly can reduce, even eliminate such responses).

[Ephemera in reply to Greenseagirl]

Been on same meds for a few weeks slowly increasing as Doctor requests. This started over a year ago while he was on Levodopa which we think started it. Then put on Ropinerole and just got worse from then. Eventually stopped Ropinerole last October but just as bad. Hopefully we get help today 🤞

[HipHop1972]

Hello Ephemera. So dreadfully sorry to hear about your husband, I to am awaiting an appointment with Professor Walker and have been for some time now. I can really sympathise with your husband as I was in the the position your husband is in but not as extreme but still pacing all night long. RLS is impossible to describe and few GPs really understand the condition.. I’d been prescribed dopamine medication years ago the last being Ropinirole which after years of use made my RLS worse and am having to withdraw very slowly which is extremely difficult which is why I am reaching out to Professor Walker.

I’m sorry I’ve not been very helpful but as has been said by other members print off as much information as you can find on RLS from the Mayo Clinic and RLS UK websites and make an urgent double appointment with your GP, this should give you 20 minutes and tell them that you are worried about your husband’s state of Mental Health and urgently need an opioid medication. The other thing that helps is Kratom Red Vein cannabis powder made into a tea but my GP wouldn’t prescribe it, it’s illegal in this country so can have consequences if not medically prescribed. I know many members myself included have written about its effectiveness. I do wish you both well and pray you’ll get the help and support you so desperately need.

[eliz45 in reply to HipHop1972]

Hi. Is CBD also illegal there? It can help. It does not have the THC which is in cannabis but it still is effective in limiting RLS. Not perfect but he needs relief.

[HipHop1972 in reply to eliz45]

Hello eliz45, you can legally purchase CDB in UK from health food shops like Holland and Barrett but it’s very weak and I didn’t find it helpful for my RLS but we’re all different so worth trying, Apparently it was legalised when we were in the EU but not now we are out. I find it extraordinary as it helps so many serious conditions but doctors don’t like prescribing so need to find one that will. Good luck 🤞

[Sunny070]

Try Robin Frackrell who is based in Bath.

[Ephemera in reply to Sunny070]

Tried him but the waiting list was 2 months and we cannot wait that long. We are going to see someone today in London.

[Sunny070]

I hope you get some help to alleviate the RLS

[CYF66]

Try Pregabalin, 100 gr. I was the sane way and this helped me

[Wiggler]

drwaynekampers.co.uk/

This is who I use. He knows of RLS and has successfully helped treat me for the last 18 months. He doesn’t specifically list RLS as a specialisation but worth an initial consultation. One of the lead clinicians at The Priory in Roehampton.

[RLSofManyYears]

Try emailing Dr Buchfuerher in the states for advice on meds. He normally responds very quickly with good advice.Have you tried Pregabalin? I'm on 300mg and that may well help. Temgesic also stopped my symptoms dead for 9 months. I was prescribed Temgesic when I was in exactly the same condition, and it worked!

[Abookwriter2 in reply to RLSofManyYears]

I've been seeing Dr. Buchfuhrer for over two years-I discovered on this forum and realized he was a 15 minute drive from me. He does a one-night a week open call but can't prescribe by telehealth call unless you're in California and still must see you once a year in person. The key to his success is being open to different meds, even low-dose opioids which has worked for me along with quitting PPIs, coffee and sugar. I've seen people establish online presence in So. California and do the annual visit then a telehealth call in between. I hope there's someone in UK to establish a relationship with.

[Little_apple in reply to Abookwriter2]

I’m very interested in becoming one of his patients. I used to live in the Bay Area. 😊 I will try and join (get accepted in to) his one night a week open call. Thank you!

[67Waterman]

Professor Walker is the (possibly) only specialist for RLS in London. Is it possible for you to get high dose co-codamol from either the pharmacy or your Doctor .... because that would help temper down the symptoms.

[Abookwriter2 in reply to 67Waterman]

Dr. Buchfuhrer understands the nuances of RLS meds and is willing to prescribe what is needed, even if it's not Parkinson's drugs. Good piece below he wrote.

neurologylive.com/view/asse...

[Meritus]

I refuse to have pharma meds so searched for less invasive treatment and found one 4 years ago. It's a foot wrap called 'Restiffic' available from a UK address, I think in Herefordshire. Developed by a female doctor who is a sufferer. Have to wear them every night as RLS comes on as soon as I sit down to relax. Also take Magnesium (tried various but on a combined one with all the variations at present. Take B6 P-5-P with it as it apparently makes it more easily absorbed. For a while I took horse chestnut drops (Aesculus) from A.Vogel and they worked for a year or two.The wraps take an hour or two to work although if only one leg is affected the other one starts to kick some nights while in bed at an unearthly hour and have to go downstairs to have it clamped. The best nights are when both legs go at once and last night, thank God, they subsided after 3 hours and I had a reasonable night but still had to get up a couple of times with my prostate problem!

I do know what it is like to have up to 3 nights sometimes with no sleep and in the summer when it is light I have been on 2 or 3 mile walks at 5am and then Ok for rest of day - except exhausted so cannot do that too often but walk around the house. It does help that my wife is sympathetic and puts the clamps on as I also have osteo-arthritis so cannot reach to fasten the velcro into the buckles. Hope this helps.

[Doings]

i suffer badly but after discovering this Forum I weaned very slowly off Pramipexole after 26 years.

Now i take Pregabalin which helps me i take 2x50 mg at night and it helps usually 95% and some nights 100%. Im relieved i found this Forum it has given me so much guidance. Im not going to increase dose until i have to. None of my GPs in UK understand RLS but some more helpful than others.

I read about this gadget which i might try therapulse.co.uk might be worth a go its better than doing nothing

Good luck

[Josana13]

Hello Ephemera, I am so sorry that your husband is going through so much. I have been there done that. When I don't sleep due to RLS, anxiety kicks in making it much worse. When it gets that bad for me a cup of coffee calms everything down. I have tried the coffee when I am not at my wits end and it doesn't work.

Read the following by Peter Bongiorno in Psychology Today

Psychology Today

Peter Bongiorno ND, LAc

"I know this may sound counterintuitive to many of you reading this, but for the right person, it may also help situational anxiety and panic attacks because it can raise levels of dopamine. Dopamine is the neurotransmitter of feeling in love for the first time. It is also important in feeling happy, motivated, and rewarded about something (versus scared).

Conventional wisdom suggests that caffeine-containing drinks are considered a “no-no” when it comes to anxiety. There’s good reason for this and many people with anxiety should avoid coffee. But, some of you reading this may benefit from coffee. Let’s review the information about coffee in terms of anxiety and mood to see what makes the most sense.

For some, the positive mood effects of coffee lie in caffeine’s ability to increase the senses of euphoria and energy, which I personally found it did for me years ago in my personal history with anxiety and panic attacks in my early 20s (I’m now 47). I found in certain situational anxiety I used to have, coffee actually made me less panicky. I didn’t know why. I just knew when I drank it, I felt less anxious and more happy. Interestingly, it turns out there was a reason for that: Caffeine helps the brain release dopamine into the prefrontal cortex, a brain area important for mood regulation. Caffeine may also help the storage of dopamine in the amygdala, another part of the brain important for anxiety regulation."

If you decide to try this, please let me know the results. I have done it several times with success.

[Dotmowatee]

Dr Robin Fackrell, The Circle Hospital Bath. It's a private consultation, he will book a telephone consultation if you desire. Unless that has changed. You can contact his Secretary.

[Desperate100]

I saw Dr Stein at the Cambridge Iron Clinic a fortnight ago. We had spoken beforehand and my appointment at the actual clinic involved going through some more details with him and then having an actual iron infusion. I don't have private health insurance and it cost me £830. I found Dr Stein very knowledgeable on the subject of RLS.

It will be 12 more weeks before I know if the treatment has worked or not - 6 more weeks for the infusion to settle in my system, and then 6 more weeks to gradually ramp down the Gabapentin that I'm on.

I'll let this forum know what happens.