RlS Help

[Angie444]

Evening RLS community. I can see from reading through posts how well informed you are and might feel fustrated at providing the same guidance... but can u help? My mum who is 80 lives in the doncaster area...she was admitted to hospital about 6 weeks ago, still not sure why, but think she may have fallen and been concussed. Shes had various tests, all coming back negative and ended up on a psychiatric ward for a week....was subsequently discharged by the doctor, who didnt understand why she had been sent there. The upshot is that she's had RLS since 2015, and its getting worse...we think the roprinerole might have augmented her symptoms as the dose was increased from 1 to 3 tablets about this time last year. Shes complaining of headaches and dizziness....had a change in blood pressure tablets fairly recently which cound be to blame, and headaches could still be concussion from the original fall...though she subsequently fell out of bed 3 times at the hospital. The neurologist she saw in the hospital diagnosed that it wasn't RLS and advised that roprinerole be stopped...which it was immediately without reducing the dosage slowly, so she she might also have has some withdrawal symptoms. She's home now but frail after the hospital ordeal, which has triggered some anxiety...she hates hospitals. She's booked in for iron and magnesium level tests in about a week...do you have other thoughts or suggestions for us? Ive read with interest the non medical options, which I'll also look into. Many thanks to you. Angie444

[Madlegs1]

Quite unbelievable.

I would be looking for a good solicitor.

Yes- she is suffering from withdrawal- quite unnecessarily.

Her treatment amounts to medical abuse.

I am too horrified to continue. Sorry.

[SueJohnson]

She should never have had the ropinirole stopped cold turkey. That's criminal at her age. She should go back on it on her original dose and let her symptoms stabilize. The signs of augmentation are when one has to keep increasing one's dose to get relief, or when one's 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 one's body (arms, trunk or face) or when the intensity of one's symptoms worsen. If she meets the signs then she will have to come off it. Ropinirole is no longer the first-line treatment for RLS, gabapentin or pregabalin is. It used to be the first-line treatment which is why so many doctors prescribed it but they are not uptodate on the current treatment recommendations. She should ask her doctor specifically for a full iron panel. She should stop taking any iron supplements 48 hours before the test and fast after midnight. She should have her test in the morning. When she get the results,she should ask for your 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. Improving it to 100 or more helps 60% of patients and in some will completely eliminate their symptoms. To come off ropinirole, she should reduce by .25 mg every 2 weeks or so. She will have increased symptoms. She may need to reduce more slowly or with a smaller amount. She should 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. But in the long run, she will be glad she came off it. On the gabapentin or pregabalin, beginning dose is usually 300 mg gabapentin (75 mg pregabalin). She should start it 3 weeks before she is off ropinirole although it won't be fully effective until she is off it for several weeks. After that she should increase it by 100 mg (25 mg pregabalin) every couple of days until she finds the dose that works for her. She should take it 1-2 hours before bedtime. If she needs more than 600 mg she should take the extra 4 hours before bedtime as it is not as well absorbed above 600 mg. If she needs more than 1200 mg, she should take the extra 6 hours before bedtime. (She doesn't need to divide the doses on pregabalin) Most of the side effects of gabapentin or pregabalin 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. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin (200 to 300 mg of pregabalin) daily." If she takes magnesium she should take it at least 3 hours before or after taking gabapentin (it is OK with pregabalin) as it will interfere with the absorption of it and if she takes calcium don't take it within 2 hours. Check out the Mayo Clinic Updated Algorithm on RLS which will tell you everything you want to know including about its treatment and refer your doctor to it if needed as many doctors do not know much about RLS or are not uptodate on it as yours obviously isn't or s/he would never have prescribed a dopamine agonist at Https://mayoclinicproceedings.org/a...

[SueJohnson]

What is the blood pressure medicine she is on? Also many medicines and OTC supplements can make RLS worse. If she is 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.

[Angie444 in reply to SueJohnson]

Hi Sue, thanks for all the information you provided...I'm not quite getting the hang of all threads yet. The blood pressure meds are Ramipril. Main worry on leaving hospital is that mum has these awful constant headaches that she describes as pressure inside that is building up in her head, combined with constant dizziness. We think (but don't know) that this is long term concussion, as she has fallen several times in hospital and a haematoma on the back of her head. Combined with RLS, it means she getting little rest to let her body heal. We are booked in for all the vitamin iron magnesium test this week, so just trying to get through as best we can. Angie

[SueJohnson in reply to Angie444]

Many blood pressure medicines make RLS worse but Ramipril is an ACE inhibitor and those are OK. I hope her headaches and dizziness improve soon.

[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.

[Jumpey]

Sue's response is comprehensive. Just wanted to commiserate and send love. What a horrible ordeal for your beloved Mum.

[Joolsg]

OMG. That is the most negligent thing I've heard yet. Stopping 3mg Ropinirole in an 80 year old. Definitely, Definitely see a solicitor and take legal action against the hospital.The appalling lack of knowledge amongst UK doctors has to stop!!

I'm in holiday but saw this and was so shocked I had to respond.

Your poor mum should start 3mg Ropinirole again and then start a very slow, monitored reduction with the help of a low dose opioid.