Hi, sorry in advance. I'm just feeling the need to vent frustration. So thankyou for reading this. Please scroll past if your low on energy.
It's been a while since I posted but have been following. Long story short....rls for over 10 yrs. Aware of and following guidence given here re diet, bloods, meds etc.
I'm currently on low dose Pramipexole, gabapentin + dihydrocodeine.
I'm aware dopamine agonist is likely causing augmentation. Cant remember last time I had a proper night's sleep (yrs). Violent leg spasms every 20 secs for hrs + hrs on end, night after night.
I've tried v.v slowly withdrawing from D.A( without Gp consent) by shaving off a few crumbs of tablet every month until I'm off totally. However by 12 weeks of increased symptoms off the D.A I cave in, as life isn't worth continuing.
Last attempt Gp agreed to prescribe dihydrocodeine 30mg(I added paracetamol) however didn't do much except make me woozy headed + banging into things as I paced at night.
I'm unable to tolerate much gabapentin due to side effects. Gp refusing any other opioid + to be honest I think side effects would be too much anyway.
GP saying can't offer anything else without a neurology opinion. ( I discussed mayo clinic/ Earls/ rls uk etc guidence)
Got a clinic appointment...
In 2026!! For a sleep clinic outreach hub...... I'm beyond frustrated.
No help is in sight. And not confident they will be of help in clinic either.
The not so nice side of me wants to give those who view rls as a minor inconvenience severe rls and see how long it takes before they beg for mercy.
I truly feel for all of you who suffer this disease.
Thank God for this forum x
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Annty
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Whoa boy! This sounds utterly awful. I'm so sorry you're dealing with all of this.
If I can offer advice, please ignore if it's out of place:
Consider calling the clinic in 4 - 6 month, every 1 -2 weeks to see if they have any earlier openings. People call and cancel last minute all the time. It might mean you get a apt sooner.
Have you tried kratom or cannabis to help your symptoms?
As you are aware Dihydrocodeine is a weak opioid. You really need a stronger one. Where do you live? I might be able to provide you with the name of a knowledgeable doctor who will prescribe a stronger one.
You might want to try switching to pregabalin. Although it is basically the same drug except you don'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. How much gabapentin are you taking?
How much pramipexole are you taking?
If you don't have side effects that bother you on pregabalin then you might try coming off the DA again. This time you can get an inexpensive jewelry scale on Amazon ($11 in the US) that measures down to .01 gram and shave off a bit of the tablet and measure it. Then reduce by that amount every 2 weeks
The pregabalin won't help much until you are off the DA and your symptoms have settled. Then try increasing it by 25 mg every couple of days until you find the dose that controls your symptoms. Since you are familiar with the Mayo algorithm you know the average effective dose is 200 mg to 300 mg. The usual maximum is 450 mg. If that doesn't work then reduce by 25 mg every couple of weeks to avoid withdrawal effects.
If that doesn't work another one to try is dipyridamole. You might want to discuss this with your doctor. It has helped some people on this forum and another forum I was on and has completely eliminated RLS in some. In the winter 2022 edition of Night Walkers, the publication of RLS.org there is an article by Sergi Ferre about dipyridamole discussing the effectiveness of it in a 2 week double blind placebo controlled study showing it completely ameliorated all symptoms. The study was by Dr. Garcia Borreguero movementdisorders.onlinelib...sciencedirect.com/science/a...
Take it on an empty stomach. (fats inhibit absorption) about 1-1/2 to 2 hours before bed. If you have headaches they tend to disappear or lessen after around 5 days. Coffee can counteract its effects by blocking the same receptors that dipyridamole aims to enhance.so the advice is to avoid it 12 to 24 hours before taking the dipyridamole. It is possible you could take it in the morning or it is possible you can't take it at all.
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, 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 you are taking any I may be able to provide a safe alternative.
Wow, very informative thanks.My Gp listens but is uncomfortable prescribing out the box, which is quite rigid in the U.K, hence my referral for medication opinion, which neuro decided needed to be face to face........in 2026.
Wouldn't know where to start with cannabis or kratom, both illegal in U.K.
Majority of your excellent info ive tried or am following.
I'm so sorry to hear of yet another GP who doesn't understand RLS and isn't prepared to help.It is so common.
We've all been in your position.
Has the GP taken full iron panel blood tests? If not, why not? First step in proper treatment.
Has GP reviewed ALL your other meds? Sedating anti histamines, anti depressants,.statins, beta blockers and PPI meds worsen RLS.
Basically you'll never be free of severe RLS and those violent leg jerks every 20 secs until you go through withdrawal. Get off Pramipexole completely.
It's hell. And very easy to cave in and start the poison again.
Start again and try to stick it out. You will get no sleep for 2 weeks after the last dose. Take time off and ask someone to stay up with you.
Perhaps try pregabalin as the side effects are slightly different. And increase slowly, bearing in mind that side effects do settle after a few weeks/months.
Hydrocodeine may not agree with you, but other opioids might. We all respond differently to different meds.
I feel for you as I have violent RLS and without Pramapexole 6 x 0.8mg per night I think I could have a nervous breakdown. My GP has now referred me to see a neurologist I’m on a waiting list.
6 pills of pramipexole is 1 and a half times the maximum. 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. I know you don't want to hear it but this means you need to come off it as it will only get worse and the longer you are on it the harder it will be to come off it and then the first line treatment for RLS - gabapentin or pregabalin won't work and nor might iron.
First off check if you are on the slow release pramipexole. The slow release ones usually have ER or XL after their name. If so you need to switch to the regular pramipexole because the slow releases ones can't be cut.
To come off pramipexole reduce by half of a .88 tablet)(ask for a prescription of these if needed) 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 but they are not up-to-date on the current treatment recommendations. Also don't let your doctor switch you 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). Start it 3 weeks before you are off pramipexole although it won't be fully effective until you are off it for several weeks and your symptoms have settled. After you are off 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 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 you take 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)."
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 up-to-date 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, 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, 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 you are taking any I may be able to provide a safe alternative.
You also need a new doctor. You have been referred to a neurologist but most are not up to date on RLS. If you tell me what city you live in, I might be able to give you the name of a knowledgeable doctor.
Dr Christopher Murphy - Consultant Neurologist . Runs a Sleep Clinic. Alexandra Hospital, Mill Lane, Cheadle SK82PX. Appointments phone 0161 495 7000 However you must be very firm and not let him prescribe ropinirole nor the Neupro Patch both of which are also dopamine agonists. He may say you are less likely to augment on Neupro (Rotigotine) but that has been disproven. You would have to see him privately and he charges around £250.
I'm sorry your having such a tough time, I can only imagine how horrible it must be for you. Fingers crossed for a sensible neurologist that can help. It was because of this forum I learnt about dopamine medication problems and realised I was augmenting. Also how to get off the D.A meds. (A work in progress for me.)
This forum is so helpfull if you need a listening ear.
Oh no! Please take legal advice.You are on a very high dose of Pramipexole and your GP has been negligent to keep upping the dose above the maximum
You are suffering augmentation, which ALL patients will suffer on dopamine agonists and your only hope of relief is to start withdrawal NOW.
Most neurologists are as lacking in knowledge about augmentation and RLS as your GP. Most will increase the dose or tell you to switch to Rotigitone, another dopamine agonist, which will quickly do exactly the same as Pramipexole.
So follow SueJohnson advice.
Hopefully, by the time you see the neurologist, you will nearly be off Pramipexole.
And try to educate your GP by referring them to RLS-UK website which has printable pages on IRON THERAPY and Withdrawal from dopamine agonists.
Most patients will need a low dose opioid to settle the severe withdrawal symptoms.
Stay strong. Withdrawal is very hard and 90% will have a really difficult withdrawal with very severe RLS and little to no sleep.
GPs have ZERO knowledge of this.
If you start pregabalin or gabapentin, they do not settle the withdrawals until around a month after your last dose of Pramipexole.
Spend a few hours reading all posts from the last month and the RLS-UK website.
The more you learn, the more you can stand your ground against the medical ignorance.
Another great website is relacs.com by a top US expert, Andy Berkowski.
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Iron + magnesium - bothered
Ropinirole and pregablin
Good news and bad news
Is it withdrawal or augmentation or just ineffective?
Hello! Newbie looking for advice and connections
