I first experienced RLS about 1982. I had no idea what was wrong with me so I just put it down to some sort of allergy. As the attacks were quite intermittent, I didn't seek any help at the time. After about a year though. The frequency and severity of the attacks increased manyfold and was now causing me to lose time at work due to sheer exhaustion.
I attended my local surgery where the doctor thought that I was stressed about something and prescribed some sort of tranquilizer which only exacerbated the situation by making me more sleepy but still unable to sleep due to the constant twitching of my legs. I put up with RLS, (no choice) for some years until the early internet came out. I discovered some articles about RLS, printed them out and took them to my doctor. He had never heard of this condition but did try to bring himself up-to-date with what was known at the time. This was my first actual diagnosis of RLS. My GP then started trying me on various drugs and drug combinations to try to control this infernal affliction. Amongst some of the things tried was Codeine Phosphate, which I ended up taking in conjunction with other drugs for many years.
About 1998 I saw a specialist who prescribed the new drug Ropinirole, which, along with the Codeine Phosphate seemed to help control the frequency of the attacks to once or twice a week. Over the years the combination of drugs taken alongside the Ropinirole has varied but for the last 12 – 15 years has been 2 x Tramadol - 50mg in the morning plus 2 x Tramadol – 50mg, Amitriptyline - 50mg, Ropinirole - 5mg two to three hours before bedtime. This controlled the frequency and severity of the attacks to, on average two attacks per week. That was until the last six months or so where it has become attacks lasting up to 20 hours a day, four or five times a week. As I am now retired, I don’t have to worry about losing days off work but that doesn’t make it any more tolerable. Two weeks ago, my GP phoned me about another issue so I told him about the inefficacy of the Ropinirole et-al. He told me to stop the 5mg Ropinirole and replace it with 2 x Pramipexole – 0.088mg. I am now on my tenth day without sleep and the RLS has been 24/7. I don’t have the right words to explain how horrendous this has been. I called to ask if I shouldn’t have cut down the Ropinirole over a period of time but was told that both drugs work in a similar way so there was no need to ween myself off and to just keep taking the Pramipexole.
I can truly understand why some people feel suicidal with this disease. I have only mentioned the medicines I take to combat RLS. I also have the usual combination of statins, blood pressure, waterworks, anti-reflux and painkillers of a 74 year old on top of the previously mentioned. I wonder if they actually think about all these interactions before just handing out another prescription for this and that.
Hopefully, (probably not in my lifetime though), they will start taking this condition seriously and realize what a truly debilitating condition RLS can be.
Written by
SteveSpectra
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Both ropinirole and pramipexole are what are called dopamine agonists or DAs. The equivalent dose of pramipexole to your 5 ml of ropinirole would be 10 tablets, so he cut your dose by 5 times so of course you are suffering. Even on 5 mg of ropinirole you exceeded the maximum dose of 4 mg.
You are 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.
This means you need to come off it. You can switch back to ropinirole and incrase it by .25 mg to control your symptoms for a few days before you start the reduction or you can increase the pramipexole to 11 tablets to do the same.
First off check if you are on the slow release ropinirole (pramipexole). The slow release ones usually have ER or XL after their name. If so you need to switch to the regular ropinirole (pramipexole) because the slow releases ones can't be cut.
To come off ropinirole (pramipexole), reduce by .25 mg (for pramipexole half of a .088 tablet) 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 it but they are not uptodate on the current treatment recommendations.
The beginning dose is usually 300 mg gabapentin (75 mg pregabalin) [If you are over 65 and susceptible to falls beginning dose is 100 mg (50 mg pregabalin.)] Start it 3 weeks before you are off ropinirole (pramipexole) although it won't be fully effective until you are off it for several weeks. After you are off ropinirole (pramipexole) for several weeks 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)."
Have you had your ferritin checked? If so what was it? That is the first thing a doctor should have done.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 not ask your 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 your test in the morning before 9 am if possible. 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. If you can't get an infusion, let us know and we can advise you further.
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...
Some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, artificial sweeteners, carbs, foods high in sodium(salt), foods that cause inflammation, ice cream, eating late at night, 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, C, 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.
Amitriptyline makes RLS worse for most people. If you are taking it for depression trazodone is safe for RLS. If you are taking it for neuropathic pain, gabapentin or pregabalin will help.
Statins make RLS worse for most people. Nustendi is a cholesterol lowering drug that is not a statin, but I don’t know if it exacerbates RLS symptoms. Ezetimibe (Zetia) - reduces cholesterol although It doesn't reduce cholesterol as fast as the statins, but according to Chris Columbus it didn't trigger his RLS. And then there are Triglide (Fenofibrate, Fibricor, Lipantil, Lipofen, Supralip) and Bezafibrate (Bezalip) which are not statins which seem safe. You might want to discuss these with your doctor. A more difficult way to reduce cholesterol is to go vegan. My husband lowered his cholesterol from 221 to 131 this way.
If you later take gabapentin or pregabalin you should be closely monitored as it can raise the bad LDL and lower the good HDL.
You don't say what you are taking for high blood pressure but many of those medicines make RLS worse especially most beta blockers. Some medicines that are safe for high blood pressure are propranolol (Inderal, Hemangeol, InnoPran) a beta blocker that may help RLS, Isosorbide Mononitrate (Monoket, Imdur) which is not a beta blocker nor calcium channel blocker. Other possibilities are: Clonidine (Catapres) an Alpha-2-Agonist used to treat high blood pressure which may help RLS and which also treats insomnia, tenex (Guanfacine, Intuniv), prazosin (Minipress) an alpha-adrenergic blocker that is also useful in managing sleep-related problems caused by PTSD and Tadalafil a vasodilator that in one study completely eliminated RLS. Clonidine can actually help RLS. Discuss these with your doctor. And then there is reducing salt by 1 teaspoon a day nih.gov/news-events/nih-res....
Some medicines for reflux make RLS worse. The best safe medicine is gaviscon advance.
If you tell me which medicines you are taking as I mentioned above I can tell you if they make RLS worse and perhaps give you a safe substitute.
Thank you so much for taking the time to reply to my post. You have given me a lot of useful information which I am going to print out and take to my doctor to see what he is willing to do about it.
I stopped using salt many years ago. Just what is in the cooked food.
The other medicines I am on comprise:
Perindopril Erbumine – 8mg - Once per day
Amlodipine – 10mg - Once per day
Omeprazole – 20mg - Once per day
Tamsulosin Hydrochloride – 400micrograms - Once per day
Atorvastatin – 20mg - Once per day
Not forgetting:
Amitriptyline Hydrochloride 50mg, (which I am now going to stop over a week or so, thanks to your advice).
Tramadol Hydrochloride – 50mg (Prescribed at one or two four times a day) I only take 2 twice daily
Perindopril Erbumine is an ace inhibitor for high blood pressure and is probably OK.
Amlodipine is a calcium channel blocker to lower blood pressure that bothers some but not all.
Omeprazole, an antacid, is a proton pump inhibitor. RLS-UK says most proton pump Inhibitors worsen RLS and several people on the forum have said it made their RLS worse. I would suggest gaviscon advance instead. Take antacids 4 hours before or 2 hours after taking iron Don't take antacids within 2 hours of taking gabapentin, antihistamines, some antibiotics, beta blockers or steroids.
Oh dear Steve. Sadly you are another victim of the total lack of teaching or knowledge about RLS and effective treatment in the UK.SueJohnson has set out excellent advice. Follow it.
Amitriptyline is STILL being prescribed by UK doctors in the mistaken belief it will treat RLS. It makes it 1000% worse, so you need to get off that too.
There is hope. We've all been in your position, educated ourselves by researching, discovered UK GPs have no knowledge and are actually worsening our symptoms.
Go slowly, follow the advice and you WILL hopefully be RLS free with the correct treatment from a knowledgeable doctor.
Thank you for your kind words. I am going to take a copy of Sues advice to my GP and get something done to help relieve my RLS. I am also stopping the Amitriptyline Tablets starting from tonight.
Refer your GP to RLS-UK website as well. It makes it clear that dopamine agonists are no longer first line treatment.It also lists all the meds that worsen RLS and many of your meds, including Amitriptyline, and the High Blood pressure meds are on that list.
High blood pressure meds should be discussed fully before you replace them.
However, if you control your RLS, your health, including High Blood pressure will improve. Many people find that once they find a good doctor and the correct treatment ( NOT dopamine agonists)they sleep and are able to stop the medications for HBP and diabetes etc.
The omeprazole is a PPI and blocks absorption of iron. This can worsen RLS for most RLS patients. If you can swap.it for Gaviscon advance, do so.
Iron therapy is first line treatment. Gabapentinoids are first line meds.
Many of us with refractory RLS are doing brilliantly on low dose Buprenorphine.
I'll keep my fingers crossed that your GP is willing to do his research and read the Mayo Clinic Algorithm and RLS-UK website and accept that ALL dopamine agonists cause drug-induced worsening.
You could also tell him that there have now been hundreds of successful UK legal actions against GPs and neurologists for failure to warn about the VERY high rates of Impulse Control Disorder (gambling, over spending, overeating, hypersexuality) on Pramipexole and Ropinirole.
The medication only attempts to dampen down the signals that your nerves are sending out which are making you feel that you need to move your legs, not address the causes of why the nerves are sending out theese signals which is most often because they are inflamed and if you know anything about inflammation you'll know that inflamed parts of the body are hypersensitive.
Inflammation is often caused by the foods that we eat which is why RLS is usually worst later in the day and least first thing in the day when we've been fasted overnight. Look on the internet for 'foods that cause inflammation' and make an effort to cut them out of your diet. There are also foods and vitamins which fight inflammation which you can add to your diet.
Thank you for your reply. I have just found out that one of the side-effects of Ropinirole/Pramipexole appears to be binge eating. I hadn't really put 2 + 2 together but I have put on a lot of weight in the last couple of years. Mainly because of eating during the night when I am pacing the floor with RLS. I can go all day without feeling hungry but the moment I start eating I feel hungry and want to eat more. Perhaps this is due to the medication as I never used to be like that. I have never had the urge to gamble though. I will cut down on eating after tea time to see if that helps.
You say the you start feeling hungry after you start eating, that could be because your eatinghigh GI foods which will raise your blood sugar, this will in turn affect you hormones which give you stronger hunger pangs and less satiety signal, so it hat fery little to do with addiction, just hormones.
RLS is worse at night because it follows the dopamine cycle. Dopamine levels drop at night and are highest in the morning.RLS patients have dopamine disfunction.
But you can't discount it as a possible cause which should be investigated. After all 'absence of evidence doesn't mean evidence of absence'. youtu.be/_ijlkRwORfM?si=u3J...
And I have NEVER discounted diet as a possibility. I actually tried very restrictive diets for extremely long time periods, as you know.And I do advise that people try restricted diets, to see if it helps.
However, when someone is asking fot help and they are clearly augmentating on DAs, diet is a complete waste of time. No diet will calm down drug damaged dopamine receptors.
At least advise the poor man that he has to get off DAs and let his brain settle before he tries a diet.
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Withdrawal hell not ending
Going through hell again
Rls Hell! 
AM I IN HELL
Another night in hell !!
