Hi im a 67 yr female and live in the uk . I was diagnosed in London privately over 30 yrs ago and since then have been on dopamine agonists , when things got bad I just changed Dop Ag . I was also under a rls specialist in Bath who when I had a problem just upped my dose! When I queried augmentation he pooh poohed it so I ended up on 4mgs Ropinirole . Last year in March I KNEW I had augmentation and with the help of this amazing site I slowly weaned off them which was pure hell and I was suicidal . In November I was finally off them and for the first time in yrs my evenings were peaceful with calm legs and nights more tolerable. I knew I was going to need some meds and my Gp is clueless so with this site and another neurologist I ended up on 1800 mgs Gabapentin , 2mgs Clonazepan and Targinact 12 hrly to help with the withdrawing . All my iron levels are fine , I tried acupuncture and cbd patches , waste of time . I tried numerous supplements . Finally by Christmas life was looking much much better until recently . Gabapentin was making me slur my speech and I was unsteady on my feet . Insomnia crept in but I could cope if legs were happy . The last 2 weeks I get off to sleep quite late but then 2/3am my legs wake me and are are going crazy , so its back to square one pacing the floor . My next neurologist appt which is now Nhs has been moved to April and Im just abs gutted . Anyone have any similar stories or better still some advice ?
Restless legs : Hi im a 67 yr female... - Restless Legs Syn...
Restless legs
I’m sure others with more experience of medication will give you a comprehensive answer. However I think the options will essentially be:
Try pregabalin instead of gabapentin as some people find the side effects are different and they tolerate one better than the other. I took pregabalin 300mg for a year, and while I was occasionally unable to remember a word it was mostly fine with no balance or other issues.
Raising ferritin to over 100 µg/L can help many sufferers. Doctors will say anything above 25 is “fine “ but most RLS sufferers benefit from 100 or more so supplementation can help. I used iron bisglycinate, check your TSAT% in your iron results is less than 45%.
If neither of these is effective then opioids are normally the next medication of which buprenorphine is most recommended due to the ability to deliver a dose over a long period but others are used e.g. oxycodone, targinact, methadone. I see you had targinact to help with withdrawal. Are you still taking it?
Like you I was on 4mg Ropinirole. I switched to 25mg Oxycontin (Targinact has Oxycontin in it) and 150mg pregabalin.It was a lot better than suffering augmentation, BUT my RLS was still very severe.
Prof. Chaudhuri at King's College, London, told me there was nothing more they could do for me and 4 to 5 hours broken sleep was the best I could expect. They refused an iron infusion. So I contacted my local hospital and sent the research evidence proving iron infusions help. I had one, but it made no difference to my severe RLS.
I emailed Dr Buchfuhrer in California and he said that, If properly treated, 97% of RLS patients should be RLS free and sleeping 7 or 8 hours a night.
So, I asked for Buprenorphine.
Overnight, my RLS went from 38/40 to 0/40. I never get RLS and I now sleep 8 or 9 hours. I am never woken by RLS.
I take a low dose of 0.4mg in pill form.
Ask your neurologist for methadone or Buprenorphine. They often work when everything else has failed.
Thank you thats what Im trying to get . Ive emailed my neurologists secretary today ( well 4am ! ) and she has forwarded it to him . Fingers crossed .
It was Dr Chaudhuri who diagnosed me about 26yrs ago. Incidentally I see his fees now are well over £1000 ! Plus he kept me waiting well over an hour with no word of an apology .Do you have a good link re Buprenorphine that I can forward to my neurologist please ? Thank you
Oh no. Dr Chaudhuri believes iron infusions do no good and strongly believes in dopamine agonists. In fact he was removed from the forum for trying to recruit volunteers to try a DA infusion.
Hi Sue , I think its fair to say Gabapentin and Targinact also sleeping tablets are not helping at all . I dont see Neurologist until end of April . I may as well come off them all I think , do I need to wean off both and if so how slowly ?Im so disappointed but Ive had a few months now .They dont even make me sleepy anymore and thats pretty much max dose of both . Thank you
Did gabapentin ever help your RLS? I forget. If not reduce by 100 to 200 mg every 2 weeks. I would wait on the targinact until you see your new doctor.
Yes for a couple of months nights were quite good , not perfect but much better than now . Thanks
Then you might want to increase it by adding 100 mg 2 hours before your earliest dose.
Ive only got 300mgs capsules , thats the problem . Is augmentation def not possible as my symptoms seem to be getting earlier and earlier in the day
Ask for a prescription for 100 mg capsules.
Augmentation is not possible with gabapentin.
I got some 100mgs Gabapentin but dont think its helping . What I am finding is my legs are evil around 6 - 8am so if I am asleep they wake me up . That used to be my good time of day so bit baffled !
If can't get a prescription for 100 mg could use a jewelry scale and open up a capsule and measure 1/3.
Ok thanks Sue
Hi Sue , Im struggling so much I dont know what to do anymore. I just wonder if Im doing everything right drug wise. Still taking from 1700 mgs Gabapentin sometimes up to 2400 but night times are hell. Start at 1600 like you said .Bad nausea sets in about 1500 mgs , not sure if thats Gaba ? Did try reducing them but its just such a gamble .Sleeping tablets made legs worse so stopped. Weaned slowly off 2mgs Clonazepam but then went back on it as abs desperate,usually take this 2hrs before bed .Targinact 5mgs , tend to take around 10am and 18.00.Did take one later but insomnia and legs were bad. 10.days til.Neurologist now and counting . Hope you are ok ?
I'm sorry - I have no advice except to keep counting down the days and pray the neurologist can help.
Hi Sue when you say reduce Gabapentin by 100mgs -200mgs every 2 weeks I presume you mean daily ?I take 1800 mgs daily at the moment . Big day tomorrow ...its Neurologist day ! Cross everything !
So let's say you want to try reducing by 200mg. For the next 2 weeks you would take 1600 mg every day Then reduce to 1400 mg and take that every day for the next 2 weeks, etc
Good luck tommorow🤞
Thank you
Just to say I got Buprenorphine prescribed today ! Very excited !
That's great !!! So pleased for you.
Me too and something for the nausea.
That is very heartening to hear, Joolsg! I am hoping that when I see a,specialist in April, she may be willing to prescribe the Buprenorphine or Methadone. I had an iron infusion in June, and it did nothing to help my RLS. The Lyrica isn't doing the trick either. I hope you keep getting great sleep!!!
I really hope your specialist agrees to prescribe either of these. It is terrible that RLS patients are still suffering severe RLS and sleep deprivation when there are two meds that could work very well.
Good luck.
researchgate.net/publicatio...
neurologyadvisor.com/report...
I can also personally vouch that Buprenorphine saved my life. I had reached the end of the road and didn't see the point in living. I wasn't depressed. Just realistic.
Buprenorphine was miraculous. Instantly stopping ALL my RLS symptoms.
Side effects of severe nausea were resolved with medical cannabis, taken for 10 days. Sweats are kept to a minimum with 10mg cetirizine anti histamines at night, racing heart and opioid induced panic attacks are controlled/reduced by a small dose of pregabalin (25mg).
I have NEVER had teeth issues in over 3 years, but Buprenorphine causes dry mouth. So I use biotene mouthwash every evening and salivex lozenges.
I recently asked Prof. Chaudhuri's assistant why King's doesn't prescribe Buprenorphine. He said they are willing to recommend it, BUT, GPs often refuse to prescribe it as it is red listed in many areas. I don't think that's the full reason. They could issue a private prescription. Buprenorphine is pretty cheap.
Which neurologist are you seeing?
Im seeing Dr Roswell Martin. I know he has prescribed methadone in the past but he doesnt think there is enough evidence re Buprenorphine .
There haven't been any UK trials. Hopefully, he will look at the articles I sent you.Good luck.
Thanks , Ive printed it off and going to hand deliver it tomorrow as the hospital is 2 mins from my daughters house
Methadone is also good and lasts a long time although not as long as buprenorphine.
Yes dr martin has prescribed methadone before to other patients but not keen on buprenorphine as lack of research . I have sent him a lot of research for him to read before my next visit . So Im crossing everything
At the moment Im just on 1800 mgs Gabapentin and 15 mgs ( 5 in morning and 10 at bedtime ) One of them is making me a bit breathless , which one would this be ? Still hoping for Buprenorphine in April !
Both can have this side effect.
Hi
I feel lost my gp issues me with 0.5mg of Ropinarole per day maximum, it has no effect my legs start fizzing as soon as I sit down I massage my calf’s until I bruise survive on little sleep and constantly move all night
Exercise baths etc do not help can anyone suggest other remedies please without the hangover effect
I suggest you make a new post as only the people who have made or replied to this post can see what you're saying.It's good that your GP refuses to increase Ropinirole because it's a dopamine agonist and WILL worsen the disease severely.
0.5mg Ropinirole isn't covering your RLS, so get off it by reducing 0.25mg every 2/3 weeks and get full iron panel, fasting, morning blood tests and raise serum ferritin above 100, preferably 200ųg/L by iron pills or iron infusions.
Ask GP to prescribe pregabalin and slowly increase to 150mg.
Ask GP to review & safely replace meds that trigger/worsen RLS, like anti depressants, sedating anti histamines, statins, beta blockers, PPI
But make the new post so you get more replies.
Thank you
Welcome to the forum. You will find lots of help, support and understanding here.
I agree with Joolsg. To elaborate on what she said and add to it.
Have you had your ferritin checked? If so what was it? It is the first thing that should be done for someone with RLS. If not when you see your doctor ask 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 your test in the morning before 9 am if possible. When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. You want your 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 your ferritin is less than 100 or your transferrin saturation is not between 20 and 45 post back here and we can give you some advice.
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. This means you need to come off it in the manner that Joolsg said.
Ropinirole and pramipexole are no longer the first-line treatment for RLS, gabapentin or pregabalin is. They 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.
First off if you are on the slow release ropinirole you need to switch to the regular ones. The slow release ones usually have ER after their name. To come off ropinirole as Joolsg said reduce by .25 mg every 2 weeks or so. 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 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.
Dopamine agonists like ropinirole are no longer the first line treatment for RLS. Gabapentin or pregabalin is. The beginning dose is usually 300 mg gabapentin (75 mg pregabalin). Start it 3 weeks before you are off ropinirole although it won't be fully effective until you are off it for several weeks. 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, 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 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)."
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...
Meanwhile some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, carbs, foods high in sodium(salt), foods that cause inflammation, ice cream, eating late at night, oestrogen (estrogen) including HRT, 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, fennel, 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, CBD, 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, vibration devices like therapulse, using a standing desk, listening to music, meditation and yoga. Keep a food diary to see if any food make your RLS worse.
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.
Hi Sue Johnson, I've been reading people's posts as well as replies to those posts. I just saw in your reply to Myfurball that sugar and late night eating (as in my increased middle-of-the-night snacking since I went off Ropinerole as well as getting up every hour or 2 throughout the night) can cause RLS symptoms. I'm trying so hard not to snack in the middle of the night, but so far I haven't succeeded. Maybe just knowing I may be my own worst enemy at this point in the game will help me to knock it off!! Thank you for your helpful responses to everyone. I nominate you and others as honorary RLS Super Doctors/Specialists! Some of these uninformed doctors would do well to hire y'all as Consultants!!
Oh my goodness, Huntingleroy, I understand your frustration and feel your pain! I got off Gabapentin pretty easily, but getting off and staying off Ropinerole has been horrible! I've been on Lyrica for about 9 months, and I don't feel that it helps at all. My daytime RLS is gone, but that might be due to the fact that I'm no longer on Ropinerole. I changed my health insurance at the beginning of January, to keep my monthly premium down. I had to switch from Mayo Clinic to Marshfield, and find new doctors. I can't see a specialist until April 24th, so I'm in limbo, getting up every 1-2 hours during the night, walking/pacing for about an hour at a time. It's exhausting mentally and physically, getting 2, 3 or 4 hours of sleep. I have also tried acupuncture and CBD/THC supplements. My nurse practitioner says my iron is fine. I exercise plenty, eat well, take vitamins, have very little caffeine and no liquor. I've gained 12 pounds because I started snacking in the middle of the night...chocolate covered almonds give me a brief "high" between the pacing and scrubbing the laundryroom floor at 2am!! Haha, other than12 pounds of fat, it doesn't seem to have any serious side effects!I hope you get some relief once you see the specialist. Please share what happens!
Its quite getting up to a clean house and Ive just sneaked in 4 shortbread . Will keep you posted !
Yes, I would like to share with you my husbands journey (shortened version of course). He has suffered with RLS for at least 30 yrs. As is known, it worsened with age. Now 74, the last 5 years have been crippling due to failed attempts to control it. Every thing you've mentioned he as been on and ultimately failed. He has been through 3 episodes of torturous withdrawal from ropinirole once, pramipexole twice with history of increasing dosing still resulting in repeat augmentation. He has found that although oxy helps (was being used for chronic pain), an ever increasing dose is needed, tramadol, clonazepam, needling, massage, nutritional changes and supplements....etc...etc...
He had a spinal stimulator surgically implanted with little to no relief of his chronic back pain (which is known to aggravate RLS...chicken or the egg? unknown). The trial of this stimulator all but stopped his RLS! Sadly the permanent implantation of the stimulator has yet to show the results the temporary lead placement showed so 1.5 yrs after he considers this a failure.
So, I continue to follow this site as I have had him try many of the things others have. The pain clinic wanted him to try the gabapentin again as his first trial failed. Around the clock increasing doses made him increasingly less functional due to central nervous system side effects.
I happened to read a response by a lady on this site who gave me an idea. She found that increasing her nightly dose of gabapentin and stopping all other doses was helping. I had my husband try this as he was on 300mg every 8 hours without relief but extreme tiredness and CNS depression.
He started taking 600mg at least 20 minutes before dinner, on an empty stomach (key to this working) and stopped all other doses. It has now been 2 months on this as it immediately worked. He has been sleeping better than he has in 15 yrs. Occasionally he wakes up with RLS (usually on nights he took the meds after his big meal) and takes 400mg of ibuprofen. Right back to sleep sans RLS.
Is this absolutely perfect? No, he has much less energy (which I believe is due to years of deconditioning) but much better than any of the previous trials. Gabapentin is not supposed to build a resistance so one shouldn't have to keep increasing the dose. In the beginning of gabapentin dosing, the Dr. start slow and build up to find the needed dose. He wasn't patient enough the first trial 2 yrs ago to continue and wrote this drug off as a failure.
I hope this helps you. If you have any questions, don't hesitate to ask. Best wishes.
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