Hi all, thought I would share my recent experience with Gabapentin.
I have had RLS since I was 18 and am now 74. I started on Pramipexole about 15 years ago 0.18mgs and as predicted it has got steadily worse so increased it to 0.36mgs 6 years ago along with co codamol. Once again it has got worse and now affects my legs, body, shoulders and sometimes my head. Every single night!!!
So, after reading on this forum about Pramipexole and augmentation I decide to ask my GP if I could try Gabapentin instead. Unfortunately this was the worst decision I have ever made. The first night I took one 100mgs tablet twice a day. I was feeling drowsy but that was expected but my brain got so fuddled within hours. I would be closing my eyes because of the drowsiness but would reach out to my hand to take something from someone but there was no one there. One time I bent down to take something from the floor but there was nothing there. When looking at some object I would see a red or green veil around it. When I reached out to remove it there was no veil. The other thing that started was an exacerbation of my sciatic pain. This became so painful that I couldn't sit, stand or walk for long.
Still no sleep that night.
I was completely zombied out the next day feeling so tired. I was determined to carry on so that night so I took one 100mg tablet 3 times a day as instructed. My husband found me in the kitchen with my eyes closed just standing there. When asked what I was doing I didn't know. Had the same experience of reaching out for something but there was nothing there. Now gone something like 36 hours without sleep so went to be bed and tried to fight the irresistible urge to move my legs but to no avail. Finally gave in and took my usual dose of Pramipexole.
At last some sleep. Now feeling so much better and the sciatic pain has subsided.
I appreciate what everyone says on this forum about Gabapentin but it looks like it is not for me. I am going back to my GP to either try a different dopamine antagonist or go back to Pramipexole and will have to just put up with the consequences of augmentation.
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jeanjack
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Did you just stop the pramipexole or did you withdraw slowly by reducing by one half of a .125 tablet every 2 weeks. If you just stopped it, that may have caused your symptoms not the gabapentin.
I asked my GP if I could take Gabapentin alongside Pramipexole as I was very anxious that it would make things worse. She consulted with another doctor and then said it was okay to come straight off Pramipexole and go onto Gabapentin. You are very likely right that is why the symptoms were horrendous. I wish doctors knew more about RLS before prescribing.
Both doctors were wrong. I strongly suggest you go back on your .36 mg of pramipexole and follow the following advice:
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 post back here as the advice will be different.
To come off pramipexole, reduce by . half of a .125 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 [If you are over 65 and susceptible to falls beginning dose is 100 mg. Start it 3 weeks before you are off pramipexole although it won't be fully effective until you are off it for several weeks. After you are off pramipexole for several weeks increase it by 100 mg 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. There is no reason to take it 3 times a day as your RLS symptoms are at night. Since it is also prescribed for neuropathic pain and is used off label for RLS that is why it is prescribed 3 times a day.
Your choice whether you want to continue taking gabapentin now, but it isn't going to do you much good.
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 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 . According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin ."
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, 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.
Thank you for the information. All sounds lengthy and complicated but will discuss it all with my GP. She probably won't understand any of it but I can try. I will also ask if there are any nhs RLS specialists in the UK so I can speak to someone who can give me the correct guidance and plan going forward.
Professor Matthew Walker at Queen Sq in London, Dr Robin Fackrell in Bath and Dr Jose Thomas at Gwent Sleep Clinic in Wales are the only specialists I would suggest.You will have to wait months to see a specialist, unless you can afford to pay privately.
They will arrange iron infusions and prescribe low dose opioids to help reduce withdrawal symptoms.
Getting off Pramipexole is hellish and you will need close monitoring as falls due to exhaustion and no sleep are common.
Have you experienced any Impulse Control Disorder symptoms?.Gambling, internet impulse buying, over spending, overeating? It's a common side effect of Pramipexole. If so, we can suggest lawyers.
Having looked at my experience again I have remembered that in the past that I have forgotten to take my Pramipexole on one night before and often haven't take them until hours after I should have done but did not suffer the extreme symptoms that happened this time. The symptoms started about 2/3 hours after taking my first 100mg tablet so I think I must conclude that it was the Gabapentin that caused them and not stopping the Pramipexole. It could be that Gabapentin is just not suited to me. Having said that I agree that the doctor should not have stopped the Pramipexole abruptly.
Gabapentin does not cause the extreme symptoms you experienced! Just because you didn't experience the extreme symptoms the one night you forgot to take them just might mean that the pramipexole was still in your system and was able to carry you over that one night. Taking it later would not cause extreme symptoms. Joolsg who is an expert on RLS agrees with me.
The way you will know is when you stop the gabapentin as I assume you have and give it a day or so to get out of your system but then stop the pramipexole for a day or two.
I had been on pramipexole and ropinerole alternatively for a few year's and would never go back on them, the augmentation is the worst. I thought bad about gabapentin for different reasons, with the help of Sue especially and the others on here, I came of very slowly taking around 3 months and I'm extremely happy to say I am now free of those 2 dreadful drugs and have been for some months now. I could not have done it without everyone's help on here and luckily my doctor went along with what I was being told from this forum and still is, including what meds I switch from and too for my other conditions. It takes a lot of time and perseverance to withdraw and sometime, the augmentation is awful, but you will get through it, I have and so many others too. Listen and read to what Sue has told you, she knows what she is talking about believe me.
I should have said I am now fully happy with Gabapentin and taking 600mg x 2 in the evening 2 hours apart and happy to say getting a fairly good night's sleep, occasionally having to take an extra 100mg if I wake
Please, please file a written complaint and copy in the Royal College of GPs.We have campaigned to get RLS taught to GPs in the UK & the RCGPs refused, saying GPs would know what to do.
Telling you to stop Pramipexole cold turkey is extremely NEGLIGENT and dangerous. That's why you were in such a state. It was NOT the gabapentin.
Getting off Pramipexole is more difficult than getting off heroin, especially for older patients.
Take this opportunity to make the surgery learn the basics so they don't harm anyone else. Direct them to this forum, the RLS-UK website.
Read all the replies and do NOT listen to your GP again. Follow SueJohnson advice.
I just posted on Caravan24 — maybe you can find it. I had the same advice getting of prami and gabapentin. A terrifying dark cloud would come over me. I heard music and voices. I was up basically 24/7 for days until my body was too exhausted to go on. I lost a lot of weight. Neuro told me the same thing — just quit in a week or two. I had to go so much more slowly. My PCP told me DAWS isn’t a measureable thing and offered to refer me to a psychiatrist. Every time I reduced the dose, the bottom would drop out…and just when I was getting my feet under me it was time to reduce the dose again. Be patient with yourself.
Sue’s advice is the correct way to get your life back. I urge you to take another look at her posts and give it a shot — even more slowly. I’ve been there and my heart goes out to you. I’ll be sending good ✨Ju-Ju✨
How quickly did you come off pramipexole and when? Did you wean off very slowly?
Were you aware that it can take several weeks after coming off pramipexole before the gabapentin will be fully effective?
I've never taken gabapentin, but I read in the Mayo Algorithm that it is recommended to start treatment 1 to 2 hours before usual onset of RLS symptoms. Treatment should start at 100 mg in patients older than 65 years. I think that you should have stayed on that low dose until the gabapentin became fully effective, but perhaps I'm wrong on that.
You then increase every few days as needed. Most RLS patients require 1200 to 1800 mg of gabapentin daily, but doses up to 3600 mg daily can be used.
So IF you had not been off prami for long and had come off too quickly and you started on 2 x 100 mg and moved quickly to 3 x 100 mg you may not have given your body enough time to adjust.
It's true that some people do not get on with gabapentin, and as I say, I've never taken it - but I'm sure that someone will be along with better advice shortly.
I do hope you didn't swap gabapentin for Pramipexole overnight? Did you stop the Pramipexole? Pramipexole withdrawal takes at least 6 months, reducing very slowly by half a 0.125 pill every 2 weeks.
So, it sounds as though your problems have been caused by your doctors. They have not been taught about RLS. NICE does now recognise augmentation on dopamine agonists and RLS, but NICE RLS guidance was only updated in Jan/Feb this year and doctors haven't caught up with it.
Even then, the NICE RLS guidance doesn't explain how slowly one needs to come off DAs, and - while suggesting that ferritin should be checked and supplemented if necessary, and lifestyle and meds reviewed - then just says "An option is to switch to a non-dopaminergic drug such as an alpha-2-delta ligand, but it is recommended that you seek specialist advice in this situation".
Exactly who is going to give that "specialist advice" is open to question, because few UK neurologists know anything useful about this either!
The NICE RLS guidance on gabapentin correctly states that the beginning dose should be 100 mg if the person is over 65 years old. However, it then says that it "did not identify any specific guidance on dose titration for use in RLS. However, for other indications..." and goes on about dosing once daily on day one, twice daily on day two, and three times daily on day three... - the guidelines for neuropathic pain not RLS!
I'm so sorry you were so badly advised. SueJohnson has now given you a lot of detailed advice - good luck!
I didn’t stop taking my dopamine agonist but have found the side effects of Gabapentin very hard to deal with. I often close my eyes in the middle of something, brain FOD and feeling incredibly drained like I had just got out of a swimming pool and my body felt very heavy. I hope I’ll get used to it soon.
please listen to the great advice on this forum. Having just done what you did and experienced absolute hell, I know they are absolutely correct. I am in New Zealand and My GP didn’t know about severe RLS or what augmentation was. I stopped dopamine agonists cold turkey and went on gabapentin and coedine after 5 days of no medication ( and 5 days and nights of no sleep). Gabapentin didn’t work for me either, but I have since found out that after augmentation , gabapentin and Pregabalin might not work, or might take much longer to work. As I learned more about what was happening to me, I was able to educate my GP and requested methadone. It has taken almost 6 months, but I am now sleeping mostly 5-7 or 8 hours every night. It hasn’t been plain sailing but I am much better that I was. I am 61.
I hope this helps to convince you NOT to go back on dopamine agonist because the longer you are on them, and the higher the dose, the worse your augmentation and withdrawal will be and the longer it will take you to eventually free yourself of them.
I can relate that it doesn't help I'm on horizant doesn't help either why won't. Your dr put you on requip thar works for me and a neuro patch also helps hope anything I said helps you
I think medications affect people in different ways. Side effects differ wildly. I take 900mg of Gabapentin 3 times a day. I couldn't function without it but it does fuddle my brain a bit. I guess you have to keep trying different drugs until you find one that suits. Ever tried cannabis? That is something many people are trying now. You can get it on prescription.
Good morning Jean Jack. I’m sorry that you were given such terrible advice by your GP and that you have found this forum. You will probably find it difficult to follow all the advice here but Sue, Joolsg really do know what they are talking about. I’m a 78 year old male in the UK and suffered RLS foot over 45 years and was prescribed Dopamine Agonist medication for years with resulting augmentation. It took me 13 months to come off Ropinirole, not easy and you have to stick with it and so pleased I did.
My GPs know nothing about RLS so I saw Doctor Thomas privately as recommended by Joolsg on this forum, he was wonderful and we did a lot on zoom and telephone and his fee’s were reasonable, anyway the upshot is he is unable to prescribe for me as he is in Wales and I’m in England and aparantly never the Twain shall meet so he wrote to my GP with his diagnosis and recommendations that they prescribe Progabalin which apparently works very well for RLS. I started taking it as recommended but suffered side effects that I couldn’t live with, kidney functions, very swollen lower limbs and blurred vision. I withdrew from that medication and slowly but surely the side effects went away. Doctor Thomas then wrote to my GP suggesting that as I was suffering from severe refractory RLS and other medications had failed that my GP should prescribe an opiate. Unfortunately they are off license in UK and not accepted by NICE on the grounds of addiction but it has been proven by the Mayo Clinic in the USA that the low dose of Buprenorphine does NOT cause addiction but does work extremely well for the majority of sufferers.
Anyway I’m afraid my story doesn’t so far have a happy ending as my GPs have decided that as a policy they won’t prescribe medication that was recommended by Doctor Thomas so currently the only medication I take is Solpadeine Max which takes the sting out of RLS but not for long but I manage about 4 - 5 hours disturbed sleep.
I would recommend you try to see either Professor Mathew Walker in London or try to speak to Doctor Robin Fracknell in Bath. You need a prescription from a doctor in England then once it’s been prescribed and you have started the treatment then your GP should be able to take over the prescription for you. BUT finally you really do have to withdraw from Dopamine medication as nothing will work fully until you do and although I’m having a bad time of it fighting the ignorance of our GPs it’s still better than being on the Devil drug Ropinirole. So I wish you all the luck in the world, stick with the withdrawal, be single minded about it and make contact with one the two Joolsg and I mentioned
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 am 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...
Hi Sue, Doctor Jose Thomas originally asked my GP to prescribe Pregabalin which he did but I had to withdraw when I got up to 200mg owing to side effects, swollen legs and ankles, blurred vision and it affected my kidney function. I don’t want to go down the Gabapentin route as side effects are similar and it took a while for my body to recover from Pregabalin.
Thanks for thinking about me but am giving my medical practice a rest as I’ve no confidence in them regards RLS and are not interested in the information I have provided them with from the Mayo Clinic. I am waiting to hear from the hospitals Neurology Department for an appointment but things being what they are over hear it’s not going to be soon.
My RLS is certainly better since I came off Ropinirole and it’s lucky I’m retired as I can manage my sleep patterns even though they aren’t the ones you would necessarily want in life, but sleep is sleep whenever it is found. Joolsg has reminded me In another post to a member of a Doctor in Bath in the South of England. who is willing to consider prescribing opioids so going to give him a call.
I too would suggest that that you try and see Dr Frackrell in Bath. I found him to be very helpful and knowledgeable. If you can possibly afford it he does have private appointments at The Bath Clinic as well as working for the NHS. I saw him at the end of last year. He tailors his advice to the patient as we are all individuals and react in different ways to medication. He also wrote a very detailed letter to my GP which was extremely useful.
Thanks Sunny070. That is very encouraging but my GPs decision was final and won’t be changed any which way. They really need to get up to date and embrace 21c medicine
Please don't think your only option is to go through augmentation, that's horrific I've been there, the gabapentin worked for my rls but the depression caused me to flatline so I needed to come off it , just decreasing my pregabalin now over the next few months and my friend has just dropped off a marajuana vape ,so I'll see if this works.As for standing and sleeping, that's exactly how I responded to the pregabalin.
The pramiplexol was brilliant for me for a month and then violent symptoms, I'd be very careful about returning to this.
Unfortunately our gp service seems quite limited in terms of knowledge, hopefully someone on here can help x
That sounds absolutely awful. I would definitely stay away from it! I do take 300mg gabapentin 5 times daily along with pramipexole 5 times daily and hydrocodone 3 times daily. I am 61 with awful RLS.
You were taking .5 mg of pramipexole 5 times a day. That is five times the maximum dose of pramipexole. Unless it wasn't .5 mg which you said it was, you were and are suffering augmentation by definition even if you aren't having any problems.
Hi, I was diagnosed with the coeliac condition 35 tears ago 20 years to late so I ended up with peripheral neuropathy and rls but my doctors have always be very reluctant to give me drugs which I am now very grateful because over the years I have other methods of keeping on top of it🤔 as there is no cure but havingg the serious coeliac condition Ive realized If you stomach not right you will not improve no matterr what you take.
I do believe that there are some, possible more, of us who have a very poor response to the sedative effects of Gabapentin. I have read here that some individuals say that all it takes is there morning coffee to offset the sedation effects, however as we are all very different I find the sedative effects are long lasting and have so much of a negative lifestyle impact that the dopamine agonists are a much better option for me. I have found that I have been able to maintain 2 mg. of Ropinerole for a very long time with episodic assistance from opioids when necessary. I am talking about 1/2 of a Percocet maybe 1-2x a week when I wake in the middle of the night with RLS symptoms. I have also found that PRN Lunesta (1-2X per week) helps me also sleep through the night more comfortably. I realize this is my personal experience and while I have benefitted from others suggestions and experiences, I hope you are able to find relief with some adjustments to your medication regimen.
I'm sure your symptoms were caused by coming off your medicine too quickly.On a positive note for gabapentin, I've been on it for 11 years and have only just had to increase my dose. RLS wakes me up and I have it 24/7. I, therefore, have to take 300mg of gabapentin on waking, 300 mg at about 5pm, 600 my at about 9pm and now often take another 300mg if my legs, ( leg/sometimes arm/rarely torso ), don't settle.
I can sit through a film, have flown to Australia, sit on long car journeys all because the gabapentin is controlling my rls. We all suffer from it rather differently and possibly my dosage wouldn't suit you, but as a nearly 70 year old, it has helped me to live a normal life.
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