neurologist recommendations

[Lyndon27]

My RLS has taken a dramatic turn for the worse over the last few months. My GP is struggling to recommend anything other than pamiprexole max dose. Can anyone recommend a Neurologist in Southern England? I feel I need to talk to someone who has an understanding of the condition.

[Joolsg]

You will not find many neurologists who know much about RLS as it's not on the curriculum.There are around 3 or 4 who know more than the basics.

Professor Guy Leschziner at Guys, Professor Matthew Walker at UCL, Dr Robin Fackrell in Bath.

You are experiencing inevitable drug-induced worsening, known as Augmentation. Dopamine agonists are relegated to 'end of life scenarios' by the top experts in the USA because they all cause severe worsening and they also cause ICD ( gambling, overeating, over spending, hypersexuality) in up to 38%.

Read all posts and replies on.here for the last 2 weeks.

Read RLS-UK website, especially Augmentation and Useful Resources.

There is a withdrawal schedule for Pramipexole and a page on iron therapy.

Print off, show to your GP and ask him to learn about this common, serious disease.

Get full iron panel blood tests. GP should refer to NHS and NICE guidance on RLS. Both make clear that iron is a cause of RLS.

Raise serum ferritin above 200ųg/L via pills or an iron infusion.

Your GP should review all your meds and safely replace all trigger meds. These are listed under 'medications to avoid' on RLS-UK website. Mainly anti depressants, sedating anti histamines, statins, beta blockers, diuretics, PPI meds.

And start reducing Pramipexole now.

You have to get off it.

It will be months before you see a neurologist, so start now.

Reduce by half a 0.088 pill every 2 weeks. Ask GP for codeine 30mg, tramadol 50mg or oxycodone 10mg to take for 4 nights at each dose reduction.

When you are down to the last 0.088mg Pramipexole, start gabapentin or pregabalin at night only.

The dosing is set out on RLS-UK website.

Learn all you can. You'll soon realise how little most GPs and neurologists know.

Do NOT let a neurologist transfer you to another dopamine agonist. They up regulate the D1 dopamine receptors and create the severe, intense, jump out of the window RLS you are currently experiencing. The ONLY solution is to go through withdrawal and start a replacement med.

Some people are able to manage without any meds once they are off Pramipexole. Especially if the cause of their RLS was low brain iron. An iron infusion dramatically improves 60% of cases.

[Lyndon27 in reply to Joolsg]

Thanks. Much appreciated advice. Had an iron infusion 11 days ago. No improvement as yet but here’s hoping I’m one of the 60%! Clearly I have to bite the bullet on Pamiprexole and start the journey to clear the drug from my system. Rough times ahead I suspect but it can’t be any worse than that donkey kick reactions I’m experiencing just now.

I think i will get to see a neurologist privately ( the guy in Bath is only a couple of hours drive away).

Thanks once again for your sound advice. I’ll keep you posted as to how I get on.

[Joolsg in reply to Lyndon27]

Dr Fackrell is good. It takes up to 8 weeks for iron infusions to kick in.

But they CANNOT stop the D1 receptors from up regulating.

Withdrawal is hell. Not gonna lie.

I nearly threw myself out of the window.

But there is light at the end of the tunnel. Once you're off Pramipexole, the symptoms settle and revert to what they were before you started Pramipexole.

[Lyndon27 in reply to Joolsg]

Looking forward to a tough wdl period! But determined to see it through. Watch this space

[Lyndon27 in reply to Joolsg]

Could you clarify what D1 receptors are and what is up regulating? Thanks

[Joolsg in reply to Lyndon27]

pmc.ncbi.nlm.nih.gov/articl...

Basically, dopamine agonists like Ropinirole and Pramipexole are supposed to calm specific dopamine receptors in our bodies. And they do 'down regulate' some of the receptors.

Dopamine receptors are all over our body and 'uptake' dopamine, a chemical hormone that creates/gives pleasure.

However, the experts now believe that dopaminergic drugs that are supposed to increase the ability of our Dopamine receptors to 'take up' dopamine actually worsen RLS by down regulating some dopamine receptors and UP regulating D1 receptors. They then behave out of character and start creating that heightened sensation throughout the body. Your whole body starts to behave in a heightened state of alerting/stress/unbearable need to move.

That's what causes the very severe RLS after months/years on DAs. Increasing the dose makes it even worse.

Pouring gasoline on the fire.

And any reduction in DAs causes the dopamine receptors to scream out for their HIT of dopamine.

Dr Andy Berkowski has a great website at relacs.com.

He talks about the dangers of dopamine agonists and why Neupro patch is just as bad, if not worse.

[SueJohnson in reply to Lyndon27]

Up regulating means an increase in the number of receptors. Down regulating is the opposite.

[SueJohnson]

what city do you live in?

[Lyndon27 in reply to SueJohnson]

Bournemouth

[SueJohnson in reply to Lyndon27]

Dr Giovanni Antonio Cocco neurologist at Bournemouth recommended by restlessinlondon. He follows the Mayo Algorithm. You can message restlessinlondon if you want to ask his experience with him.

[Lyndon27 in reply to SueJohnson]

Thanks a million. I’ll get in touch with restlessinLondon as we speak

[Joolsg in reply to Lyndon27]

He has moved to Dubai. So check when he is next due back.

[SueJohnson in reply to Joolsg]

Darn - I see that in my notes but missed it when I told Lyndon27.

[Lyndon27 in reply to Joolsg]

Yes saw that

[SueJohnson in reply to Lyndon27]

He is at Shalbourne Private Health Care in Swindon. Unfortunately that is as far away as London.

[SueJohnson in reply to Lyndon27]

Let's try again 😀MrVimes has a good doctor in Wiltshire. You can message him for his name. He prescribed methadone for him if you need it.

[MrVimes in reply to SueJohnson]

I saw Dr Graham Lennox. He was very good. I live in Wiltshire, but I note he was a 'locum' neurologist, so I suspect he covers a much larger area.

[SueJohnson in reply to MrVimes]

Thanks for the name.

[Lyndon27 in reply to MrVimes]

Thanks for the info. Appreciate it.

[SueJohnson]

I agree with Joolsg and will give you my usual advice which will repeat a lot of what she has to say.

Since you are suffering now I suggest you add half of a .088 [.125] tablet and wait until your symptoms settle. However don't be tempted to stay on it as you will augment quickly again

First off check if you are on the slow release pramipexole. The slow release ones usually have ER or XL after their name. If so you need to switch to the regular pramipexole because the slow releases ones can't be cut.

To come off pramipexole reduce by half of a .088 [.125] tablet)(ask for a prescription of these if needed) every 2 weeks or so. You will have increased symptoms. You may need to reduce more slowly or with a smaller amount or you may be able to reduce more quickly. Wait until the increased symptoms from each reduction has settled before going to the next one. You will suffer and may need a low dose opioid temporarily to help out with the symptoms especially as you near the end. Some have used kratom or cannabis temporarily to help. But in the long run, you will be glad you came off it.

Ropinirole and pramipexole are no longer the first-line treatment for RLS, gabapentin or pregabalin are. They used to be the first-line treatment which is why so many doctors prescribed them but they are not up-to-date on the current treatment recommendations. Also don't let your doctor switch you to Neupro (rotigotine). S/he may tell you that it is less likely to lead to augmentation but that has been disproved.

The beginning dose is usually 300 mg gabapentin (75 mg pregabalin) [If you are over 65 and susceptible to falls the beginning dose is 100 mg (50 mg pregabalin.)] Start it 3 weeks before you are off pramipexole although it won't be fully effective until you are off it for several weeks and your symptoms have settled. After that increase it by 100 mg (25 mg pregabalin) every couple of days until you find the dose that works for you.

Take it 1-2 hours before bedtime as the peak plasma level is 2 hours. If you need more than 600 mg take the extra 4 hours before bedtime as it is not as well absorbed above 600 mg. If you need more than 1200 mg, take the extra 6 hours before bedtime. (You don't need to split the doses with pregabalin)

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 magnesium even in a multivitamin or magnesium-rich foods, take it at least 3 hours before or after taking gabapentin (it is OK with pregabalin) as it will interfere with the absorption of gabapentin and if you take calcium don't take it nor calcium-rich foods within 2 hours for the same reason (not sure about pregabalin). According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin (200 to 300 mg pregabalin)."

Some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, artificial sweeteners, carbs, foods high in sodium, foods that cause inflammation, foods high in glutamate, ice cream, eating late at night, dehydration, electrolyte imbalance, melatonin, Monosodium Glutamate (MSG), collagen supplements, low potassium. eating late at night, stress and vigorous exercise.

Some things that help some people include caffeine, moderate exercise, weighted blankets, compression socks, elastic bandages, masturbation, magnesium glycinate, fennell, low oxalate diet, a low-inflammatory 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 (epsom salts), vitamins B1, B3, B6, B12, D3, K2, if deficient, and potassium and copper if deficient, massage including using a massage gun, vibration devices like therapulse, using a standing desk, playing and listening to music, creative hobbies, meditation and yoga.

Many medicines and OTC supplements can make RLS worse. If you are taking any I may be able to provide a safe alternative.

[Angelcat1]

hello good morning… I hope your well, I have and understanding of it I’ve had it for 26 years a it’s progressively got worse over time nothing has worked.. until I went on oxycodone liquid its an opioid within 5/10 mins of taking it im restless free its a game changer for me anyway … I no how your feeling… its made me suicidal at times… good luck please please keep intouch lots of love Cat xx

[Lyndon27 in reply to Angelcat1]

Many thanks for your interest. I will indeed keep in touch as to how I get on. Oddly enough knowing people with the same issues has a sort of therapeutic effect and I am feeling much more positive about the future.

[Clair56]

I was at my ropes end my rls was so severe and my dr gave me Gabapentin and with my other meds my rls has subsided, thank God and my dr. Hope this will be of help.

[Lyndon27 in reply to Clair56]

Many, thanks for your interest. Knowing and talking to people with the same issues is a great help. Thank you once again