This is my first post and I really need some advice.
My husbands been on this forum ( I think his username is Hazuki on here) and I'm really struggling to help him.
So as you know he's been on quite a journey with DA and his RLS.
So where we are now,
He's been off Ropinirole for roughly 6/7 months now.
He started Gabapentin and it hasn't worked. So for a while he's been using a combo of Gabapentin and Kratom which seems to work. But he wanted to come off Gabapentin as the side effects aren't worth it, especially if it's not really working. Plus Kratom isn't exactly legal here, so it's not a long term solution.
So the GP spoke to a neurologist, who advised he tapered off Gabapentin and started Clonazapam.
They advised him to taper off the Gabapentin whilst titrating the Clonazapam up to 2mg. But here's the issue, he's already started taping off the Gabapentin, I think his last dose was 4 days ago. He's only just started taking Clonazapam 3 days ago.
So this is where we are. We are struggling to know what to do. As his RLS has got worse over the past few days (as I expect coming off Gabapentin would flare up symptoms), he's now on a cocktail of Clonazapam and Kratom.
Is it worth staying on a low dose of Gaba until his Clonazapam is at 2mg? Or should he stick at it and hope that the Clonazapam starts to work soon?
There's also the issue with Kratom. What should we do with it? As Ive read that Kratom can interact pretty nastily with Clonazapam, so should be try and come off that first too?
As you can tell I'm really stuck on what to do, and being a spouse being unable to help and watch him suffer is really heartbreaking.
Any advice you have would be great.
Thanks 👍
Amy
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Clonazepam may help but it has a half life of 40 hours so is likely to leave him drowsy the next day. I took it and it did nothing for my RLS although others say it does. Since his RLS symptoms were worse as he was coming off gabapentin, that says that it was working and he probably wasn't taking enough of it, but obviously that's not a solution for him because of the side effects. He might want to try switching to pregabalin. Although they are basically the same drug as gabapentin except one doesn't need to divide the doses, and the side effects are basically the same, some people find that the side effects that bother them on one don't bother them on the other. Divide the gabapentin amount by 6 to get the correct dose. Otherwise the usual recommendation if it doesn't work is a low dose opioid. If his doctor won't consider it, print out the appropriate section of the Mayo Clinic Updated Algorithm on RLS to show to his doctor at Https://mayoclinicproceedings.org/a...
Hi Sue, thanks for responding so promptly. He's tried pregabalin too but again the side effects were quite bad so it's not really an option. Oh that's interesting. The neurologist has given oxy as an option, but they're very reluctant and want to explore all the options before prescribing.
I find clonazepam to be very helpful as an adjunct medication (I also take pregabalin) but as SueJohnson says it has a long half life, and so builds up in your system. It can also have a flattening effect on mood.I would have thought that he'd be experiencing some benefit from clonazepam even at a lower dose.
He might try sleeping on a chair (recliner). Also I sleep across the bed with my legs hanging down. For some reason it helps better with my shoes on. Go figure.
Gabapentin and pregabalin didn't work for your husband. His RLS is therefore refractory.Dr. Buchfuhrer mentions that Gabapentin and pregabalin do not work for many of us who experienced augmentation and withdrawal from Ropinirole or Pramipexole. He believes our dopamine receptors are permanently damaged.
The Mayo algorithm sets out that opioids should be used for refractory RLS.
Clonazepam doesn't seem to work very well for refractory RLS.
Speak to the GP and show them the Mayo algorithm and ask for a low dose opioid.
Targinact is the usual first opioid GPs will prescribe for RLS. It works well for many but I found it didn't provide 24 hour cover. Average dose is 30mg, taken twice a day, 12 hours apart. Alternatively you could ask for oxycodone and take 2 hours before bed.
As with all meds for RLS, we all respond differently.
I doubt Clonazepam will help as it's used more for intermittent or moderate RLS.
That sounds like my husband's situation too. It's been just about a year since the ropinirole started go augment, and at the minute it feels like there's no end to the struggling through RLS. Thanks for the advice re: opioids, it's such a struggle to get the GP to listen, even though the neurologist has mentioned it as an option in the treatment.
Clonazepam made my rls worse. Targinact is licensed in the UK to treat this condition. I insisted and I have it at a low dose . Works for me as I try to come off pramipexole.
Thanks for the advice, it looks like we'll be going down this route. It's also lucky that your GP gave it you coming off Pramipexole, we begged for help but they was even reluctant to give Tramadol (which didn't work anyway).
also, just a quick one, when you was taking Clonozapam, how early did you take it before bed? As I've seen that it's quite a slow releasing drug and it's effectivity can take anywhere between 1-4 hours to start to work, but the GP hasn't actually told him when to take it.
I have had RLS for many years and get beside myself at times with hardly any sleep. Initially I was on Madopar for many years but kept needing to take more to take affect. My Dr wanted me to get off them so gave me Ropinirole. I have been taking 2 at night plus the odd Madopar, Panadol and Codeine Phosphate to get me to sleep. Nothing works well. Then I had a hip replacement and was put on Gabapentin which I thought may have helped my RLS but it did nothing. Last week I went back to my GP and he upped my Ropinerole to 3 at night about 1 hour before bed. Fingers crossed but I have actually not had RLS bad for 3 nights and got to sleep fairly quickly. That’s really all I can advise. One more thing, while in hospital with my hip replacement I was given OXYNORM! I didn’t have any RLS at all but it is an awful drug with horrendous side affects so not an option even though it works!!! Hope this all helps. I can sympathise with everyone because I absolutely dread going to bed some nights knowing what my keys are going to be like.
Hi Dunedinite, sorry to hear that your journey is rocky, it's really an awful condition and I think it's cruel that the GPs here seem to have no idea how bad it is.
It's probably worth you googling Ropinirole augmentation in this group, as coming off Ropinirole was one of the most difficult things my husbands ever done. I wouldn't want anyone to go through that hell like he did. It was difficult to watch.
It's great that ropinirole is working for you but do be aware of the signs of augmentation: which 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. I would advise you not increase it any more if the 3 tablets stop working, because the more you take the harder it will be to come off it. As I am sure you are aware dopamine agonists like ropinirole are no longer the first line treatment for RLS because of the danger of augmentation.
I just want to say thank you to everyone in the group for responding. Ever since my husband started tapering off Ropinirole and we found this group, it's been a life saver, quite literally. The medical system here really doesn't understand RLS at all and have been next to useless. Without your advice and experience I don't think we would be where we are. So thank you so much! ❤️
I found that taking an iron pill each day helped a lot! Ropinerole stopped working for me so I now take Pramapexole 4 x day plus 1 iron pill each day! It helped a lot!
Hi there ,Amy I've never heard of either of those two tablets . I'm still on ropinerole which I hate taking I also have started a potassium citrate tablet which I take early evening . I'm actually afraid to stop as I don't think I could function without my tablets .
Clonazepam is a benzodiazepine like valium used to sleep. Gabapentin is now the first line treatment for RLS. Dopamine agonists like ropinirole and pramipexole used to be the first line treatments but no longer are because of the danger of augmentation. Why do you hate taking your ropinirole?
I have been on ropinerole for a long time, and not working as well as it did. I don't like taking the tablets and would like to find what's triggering my restless legs and address the ailment but not with tablets
If they are not working as well as they used to, unfortunately you are suffering from augmentation which up to 70% of those on ropinirole do. This means you need to come off them. To come off ropinirole, 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. 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. 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 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. If you take magnesium take it at least 3 hours before or after taking gabapentin or pregabalin as it will interfere with the absorption of them. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin (200 to 300 mg pregabalin) daily." If you haven't had your ferritin checked, ask your doctor for a full iron panel. Stop taking any iron supplements 48 hours before the test and fast after midnight. Have your test in the morning. When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. If your ferritin is less than 100 or your transferrin saturation is less than 20 ask for an iron infusion to quickly bring it up as this will help your withdrawal. 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 atHttps://mayoclinicproceedings.org/a...
Unfortunately it is not likely you will be able to relieve your symptoms without medicine. However this may help: 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.
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.
I couldn't get along with gabapentine either. I'm in the UK and take zamadol which is a slow release opioid. I take it half hour before bed and the result are much better than any other treatment, for me. I found a regular opioid gave me too many ups and downs and left me sleepy all the time.
Thanks for sharing, just out of curiosity, how easy was it to get the GP to start you on Zamadol. We've been trying for a while but they're so reluctant to start him on any. The wanted him to try Clonazapam for three months, but after just a week of no sleep and hellish restless legs, it's clear it doesn't seem to be working. We have a gp app on Monday, but we really don't know if there gonna prescribe it (surely this is the only thing left now) or keep on the Clonazapam for longer. Fingers crossed as he really needs some respite from the restless legs.
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