neurologist

[Kentcats]

Hi, can anyone recommend a RSL specialist in Tunbridge Wells, Kent, England. My mother has been under a GP for treatment for over 20 years and this syndrome is severely affecting her quality of life. She has been on medications in the dopamine group for over 20 years and they no longer work. She barely sleeps, is unable to relax and has no control over the movement in one leg now which kicks so violently it has cause problems with her knee. I would like her to see a specialist and would welcome any recommendations. Many thanks 🙏

[SueJohnson]

The two I have are both GPs.

Dr Michael Fernando GP at Chestfield Medical Centre, Whitstable, Kent county used and recommended by Seahorse77 said listened to him & was guided by advice on forum You can message him to find out more

Dr Simon Merritt a sleep specialist, not a neurologist at the Benenden Health Hospital, Kent South East - recommended by Katrina to MillieBerlin.

[SueJohnson]

Welcome to the forum. You will find lots of help, support and understanding here.

She is probably suffering from augmentation. The signs of augmentation are when you have to keep increasing your dose to get relief, or when your symptoms occur earlier in the day or there is a shorter period of rest or inactivity before symptoms start or when they move to other parts of your body (arms, trunk or face) or when the intensity of your symptoms worsen. That means she needs to come off it.

Since I don't know which one she is one I will give you the one for ropinirole. If it is pramipexole or Neupro ((Rotigotine) I will give you the substitute for it after that.

First off check if she is on the slow release ropinirole. The slow release ones usually have ER or XL after their name. If so she needs to switch to the regular ropinirole because the slow releases ones can't be cut.

To come off ropinirole reduce by .25 mg every 2 weeks or so. Ask for a prescription of these if needed. She will have increased symptoms. She 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. She will suffer and may need a low dose opioid temporarily to help out with the symptoms especially as she nears the end. Some have used kratom or cannabis temporarily to help. But in the long run, she will be glad you came off it.

Ropinirole, Neupro 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 her doctor switch her 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 she is over 65 and susceptible to falls the beginning dose is 100 mg (50 mg pregabalin.)] Start it 3 weeks before she is off ropinirole although it won't be fully effective until she is off ropinirole for several weeks and her 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 she needs more than 600 mg take the extra 4 hours before bedtime as it is not as well absorbed above 600 mg. If she needs 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 she takes 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 she takes 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)."

Has she had her ferritin checked? If so what was it? That is the first thing a doctor should have done. She wants her ferritin to be over 100 as improving it to that helps 60% of people with RLS and in some cases completely eliminates their RLS and you want your transferrin saturation to be between 20% and 45%.

If not ask her doctor for a full iron panel. Stop taking any iron supplements including in a multivitamin 48 hours before the test, don't eat a heavy meat meal the night before and fast after midnight. Have her test in the morning before 9 am if possible. When she get the results, ask for her ferritin and transferrin saturation (TSAT) numbers. If her ferritin is less than 100 or her transferrin saturation is less than 20% ask for an iron infusion to quickly bring it up as this will help her withdrawal. If she can't get an infusion, let us know and we can advise you further on the best iron tablets to take and how to take it.

Check out the Mayo Clinic Updated Algorithm on RLS which will tell you everything you want to know including about its treatment and refer her doctor to it if needed as many doctors do not know much about RLS or are not up-to-date on it as hers obviously isn't or s/he would never have prescribed a dopamine agonist at Https://mayoclinicproceedings.org/a... (to be continued)

[SueJohnson]

Maximum characters reached which is why I had to continue it.

Pramipexole - reduce by 1/2 of a .088 or .125 tablet.

Neupro - She can do the reduction in one of 2 ways. Using a 1 mg Neupro patch cut it into sixths. The easiest way is to draw lines on it. This will equal the .25 mg reduction that is advised since 1 mg of Neupro = 1.5 mg ropinirole. Or she can switch to ropinirole. Multiply the dose of Neupro she is taking by 1.5 to get the correct amount. Since she can get ropinirole in .25 tablets this is the easier way to reduce.

Since she is suffering now I suggest she adds half of a .088 [.125] tablet or .25 mg ropinirole and wait until your symptoms settle. However she shouldn't be be tempted to stay on it as she will augment quickly again

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, oestrogen (estrogen) including HRT, 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 she is taking any I may be able to provide a safe alternative.