Another few nights in a row of pacing the house till 3am. Spoke to my GP this morning who will not increase my dose of Gabapentin, I'm on 300mg a night which she says is the maximum dose she can prescribe.
I told her about the updated NICE CKS guidance and she's referring me to Neurology for them to decide on a course of treatment. So we wait, and dement myself through lack of sleep and dread of the night to come, it's bloody misery...
Sat at my desk trying to function on three hours sleep. Think it'll be a camera off on Teams kinda day, because I look like I've been dug up !!😴😂
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Thanks Jools, I'm in Scotland which means we have to be different to the rest of the UK just for the sake of it 🙄 This is the rubbish that's published on our tartanised NHS Inform website .
If primary restless legs syndrome is causing more severe symptoms, there are medications that may help. Your GP may suggest trying dopamine agonists, painkillers, hypnotics or levodopa. Last updated April 2024.
Hi, I am quite worried after my last visit to what was a very supportive GP yo my RLS to now, it seems she is changing. I told her I occasionally took 400mg instead of 300mg as my 1st dose, but my next 2 doses, 2 hours apart hadn't changed from 600mg each. She then started talking about the cost our States pay per tablet and maybe I should be referred back to our Parkinsons Doctor that I first saw, whos only option was to give me pramipexole and ropinerole alternatively, or the patch when I said they weren't working and I was having to up the doses and swap them regularly, I do NOT want to have to go back on them again. I'm worrying myself silly atm so my stress levels and anxiety are high atm, especially after just losing my Mother and my legs are kicking off big time due to this, somim not sleeping. I can't explain to my GP all the medical jargon and Information and get flustered, I've tried reading some of the guidances but I get lost and everything just goes over my head.
Simply refuse point blank to go back on dopamine agonists.Everyone WILL suffer drug-induced worsening. It's simply a matter of When, not if.
I hadn't realised you were on 1500mg gabapentin. Your post only mentioned 300mg gabapentin.
If you are taking 600mg 2 hours & 4 hours and 300mg 6 hours before bed- that is the average dose and the correct way to take it.
You cannot switch back to dopamine agonists.
And the Neurologist won't be there to help you get off the dopamine agonists.
I suggest you write a written complaint to the GP surgery and your MP when you are less stressed.
Take a family member or friend with you to confirm this.
Say that your current regime of 1500mg gabapentin is working. That you experienced drug-induced worsening on dopamine agonists and therefore cannot go back on them. Both NHS and NICE websites confirm that.
And if you can see a good neurologist to confirm this- it will help.
Hi Jools, yes my post did mention the 2 x 600mg doses. Sadly we don't have MPs but states members who decide what tablets we can get and what we can't. I don't think it would make any difference, tbh especially when they refuse cancer patients meds they need to keep them alive due to cost! Apparently these tablets are very expensive so I thinks it's only a matter of time before they day no more, then I don't know what I will do, especially with my Doctor actually saying ropinerole and pramipexole were the front line treatment for RLS in the UK. She has always been very supportive, but this time left me a bit concerned with the things she said, I did say when I got home,I think I'm going to have to come of gabapentin soon as I think they will only offer me ropinerole or pramipexole very soon.
GP called me this morning with an alternative that was recommended to her by the Neurologist she emailed, because the 300mg of gabapentin (that is the max dose they will prescribe) is not working for me, unsurprisingly.
The alternative is, wait for it... ropinirole. No mention of augmentation but did warn of risk of ICD, needless to say I politely declined that. Le Sigh
Jesus, Mary & Joseph!Ask for the name of this 'neurologist' so we can add to the growing blacklist.
Clearly, you will need to beg, borrow, steal to find a way to see a private neurologist.
But first ask their secretary if they're familiar with Mayo Clinic Algorithm and new AASM guidance and new NICE cks guidance. Otherwise- waste of £300.
So sorry your having this problem, 300 is a starting dose, what is wrong with these Doctors, they really don't care or want to realise what it's like to have R LS, I really hope one day they find out!
Can you change GPs or afford to go private - £250 - £350? If so I may be able to give you the name of a knowledgeable neurologist. What city do you live in?
When are you supposed to see the neurologist?
You can get co-codamol OTC which may help a little. It contains 8 mg codeine. You can take up to 8 in 24 hours.
Thanks Sue, changing GP's isn't really an option as we live rurally so our options are fairly limited. Not sure about the wait times for neurology, although she did go on to say she would email them for advice when I pressed.
I'm about an hour or so drive from Glasgow so if you have the name of someone there I could try and get a consultation privately.
Dr Colin 0'Leary neurologist in Glasgow that Scottie99 saw - I have no idea how satisfied he was but you can message him and ask. Let me know what he says.
I do know one not to see - Dr David P Breen
You might ask your doctor the name of the neurologist she is referring you too just in case it is the same one
Hi Sue, Guernsey is totally private sadly it's app £70 just for a 10 min consultation with the GP. The one I saw that was the parkinsons doctor is also the only one available. I have a feeling I will soon be charged for the gabapentin whichninwont be able to afford anyway. She has written me another prescription for my 300 at 6pm and another for the 600mg which I take at 8pm and 10pm but sometimes I take another after midnight if I need too and the walking up and down isn't working. So I've never taken more than 1600mg altogether. She did say this time when I said about ropinerole and pramipexole that they are no worse than gabapentin and infant gabapentin was mu h worse with the side effects, she then said "where was I getting the information from? the forum I'm on" I said yes, you know that. She also said in answerbto me stating they were not the front line meds anymore, she answered with yes they are in the UK that is what is used. I came out ofnthe appt feeling very low.
Tell her NICE in the UK changed its advice in February stating that gabapentin is now the first line treatment for RLS and that dopamine agonists shouldn't be used. In fact print it out and show her. Also although she may not be interested print out the Mayo Updated Algorithm showing her the same thing plus that the average effective dose is 1200 to 1800 mg at Https://mayoclinicproceedings.org/a... and the information at rls-uk.org/ and there is even the AASM recommendations at jcsm.aasm.org/doi/pdf/10.56...
Maybe if you overwhelm her showing that it is not just the information on the forum that says this she will listen. At least I hope so.
Thank you so much, I hope so too, as its starting to worry me that I will be left with nothing to help me. I know with losing my mum I've been so upset the RLS has been worse, but I dont want to go back to dopamine again altho she says gabapentin is a dopamine too.
That is what I thought but she obviously didn't, thanks as always Sue, will go to library and print them off and give to her secretary, whether they get looked at is a different matter but I've tried. The Neurologist we have is a Mr Basil Ridha, have you heard of him at all, he's based in Brighton and comes to Guernsey by the looks of it 1 week a month.
If you want to give me your email address via private message I’ll send you the BMJ Best Practice booklet. Whilst it doesn’t have dosages it has a lot of other information that you (if not the gp) could find useful.
I also strongly suggest you get an appointment with a different gp in the practice armed with all the printed resources and information from the RLS-UK website including the updated NICE guidelines.
It was a 76 week wait for neurology up here, and most of them don’t know anything about RLS and will try to put you on dopamine agonists.
Mine was ok though (with some strength from me) and I’m now getting an iron infusion tomorrow (after 6 months of oral iron with plummeting iron results)
I had already gone up to a high dose of gabapentin (I think 1800 mg) added in dihydrocodeine and then switched onto Pregabalin as I didn’t want to start any earlier with gabapentin. Now I’m on 450mg plus a higher dose of dihydrocodeine.
I was able to “direct” my GP using all the information I had gleaned. Mayo guidelines are great, though American but are quoted in the BMJ document mentioned above.
Fear not!! 300mg of Gabapentin is Nothing! Get onto 300mg of Pregabalin. (100mg 8pm 200mg 10pm.) This will sort you out. Neurology were useless for me. They all can’t make their minds up if RLS is Physical or Mental. I live in the UK. I had 6 months off work with everyone trying to sort out my RLS. Pregabalin has worked ok for me back at work now for past year.. i believe the only tome I have a bit of RLS now is if I get stressed. Good Luck and Best Wishes. Jeremy.
Hi Jeremy, I'm also in the UK. I saw different GPS and non had any idea what to do except keep trying me with different meds and the one trainee GP I was under increased the tablets each time, he then left the surgery. Augmentation was off the scale, 2 of the GPs were so rude to me, because they basically had no idea what to do. After months I was sent to see a neurology consultant and he prescribed codeine 3 times a week and ropinarole 2mg. I'm supposed to be going back round about May, he said he'd contact me via letter, but the RLS is also In my arms. He suggested Gabapentin being looked into in the next appointment. Honestly, i cry and cry at times with it. Car journeys being hell and flying. Trying to function on no sleep for days and days is relentless. What do we do ?
So the neurologist has put you back into augmentation! RLS moving to arms is a sure sign. Have you experienced gambling/spending/overeating/hypersexuality?The negligence is off the scale.You have to get off Ropinirole slowly using the Withdrawal schedule on RLS-UK website.
And file an adverse drug side effect via Yellow Card Scheme. See pinned posts.
Refuse to take another DA.
Write a complaint to the RCGP and ABN and your MP.
PS Who was the neurologist who put you on 2mg Ropinirole after you showed clear augmentation signs? We need to warn patients to avoid him/her.
Yes, I have augmentation in arms and legs, I did mention to the consultant od had horrendous augmentation on pramipexole, like really bad I couldn't take it anymore. He prescribed doubling the ropinarol from 1mg to 2mg after 4 weeks and codeine for bad nights, only to use upto 3 times a week.The neurologist is stafford hospital, Dr Salim, I think it was. He said he'd see me again at about 6months so should be May time . He was really lovely man, and kind and listened. But yes I'm feeling it in my arms again
I'm sure he is lovely. But he's a very bad neurologist! His advice is criminally negligent and has sent you back into drug-induced worsening.He needs to update his knowledge urgently.
Please consider a formal complaint to the ABN and GMC.
This man will condemn others to further suffering.
It is bad, it's so life changing, with no sleep, high anxiety with moderate to severe depression. Thank you so much for your guidance, I shall read the posts about the fellow card and complaints procedure .
I was in your situation in 2016 and was advised to get off Ropinirole. I followed the advice of the good people on here. They were clear that I should never switch to another dopamine agonist as I would quickly get RLS in my arms and face again. So I went through withdrawal. Hell.But the daytime RLS and symptoms in arms & face disappeared. And sure enough- when I saw a top neurologist 3 months later he tried to put me on Rotigotine, another DA. But by then I had researched extensively and knew he was negligent.
By 2021 I had switched to Buprenorphine and now have no RLS ever.
You can experience that too.
But you have to get off dopamine agonists. So start now. Tell your GP what you are doing. Show GP the RLS-UK withdrawal schedule and also the new NICE cks guidance.
By the time you see Chris Murphy- you will nearly be through withdrawal.
Is Buprenorphine available on the UK for the GP to prescribe it to me?Iv spoken with husband about Chris Murphy, so hopefully we will be able to afford it soon.
If it's possible, please could you help me to understand why augmentation happens and what it is.
I know it effects my legs and arms when DAs increase but iv never been explained anythin about it.
While I was pregnant it wad the worst I'd ever known it and literally all night, everynight and whilst sitting or lying down even in the day. It's very rare I can actually see a film all the way through. Cinemas and theatres are out , not an option for me.
Quite often the car has to be stopped because I literally can't take it anymore. I have to get out and move.
Flying is torture until movement is allowed and the belt off .
Augmentation is drug-induced worsening caused by dopamine agonists. They are the ONLY drugs that make the symptoms of RLS much worse. The drugs cause D1 dopamine receptors to be 'up regulated' and hyper excited. That causes severe RLS and makes it move from your legs to your arms and other body parts. The ONLY solution is to get off ALL dopamine agonists.
Buprenorphine is available in England BUT many GPs are too scared and too untrained to know how to prescribe it. It is also red listed in many areas which means a GP is not allowed to prescribe it without the supervision of a neurologist.
So see Chris Murphy. He WILL prescribe Buprenorphine. But you have to go through withdrawal first.
We have all been in your position.
We have been through the terrible withdrawal.
But many of us are now completely RLS free.
I never get RLS. I sit still on planes and in cars.
I have my life back.
Because I ignored the top neurologist who tried to condemn me to years of further suffering.
You have to read and research.
Start with RLS-UK website. And the Mayo Clinic Algorithm and the AASM guidance. And the new NICE cks guidance.
UK GPs and neurologists aren't taught anything about RLS. There are only around 10 in the whole UK who know more than the basics.
Thank you so much, when I have my next appointment I will let him know how I feel and I won't be using DAs. I honestly never thought we could ever be RLS free. I was told it only gets worse.
That's because if total lack of medical training and knowledge in the UK.Reduce the Ropinirole slowly by 0.25mg every 2 weeks. RLS worsens with each reduction. Ask GP for 60mg codeine to take for 4 or 5 nights after each reduction.
And demand full iron panel blood tests.
As the US top experts say- there's no RLS as severe as Dopamine agonist worsened RLS.
And Dr Buchfuhrer says 98% of patients can be RLS free with the RIGHT doctor using the RIGHT tools (meds).
Dr Omar Salim is the WRONG doctor using the WRONG tools.
There is hope. You WILL be in a much better position soon.
Ask for more to cover twice a night for 4 or 5 nights after each 0.25mg dose drop.And get medical cannabis- it can help a little. Expensive but useful for the 2 weeks of severe withdrawals after the last Ropinirole dose.
Its been a life saver being in this forum,it really has. I'm ever so grateful for everyone's help and guidance. Without this I'd probably be suicidal with how severe RLS can be .
I gave you this information before but it has been awhile so I will give it to you again.
First off check if you are on the slow release ropinirole. The slow release ones usually have ER or XL after their name. If so you need to switch to the regular ropinirole because the slow releases ones can't be cut if needed.
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. Some have used kratom or cannabis temporarily to help. But in the long run, you will be glad you came off it.
On the gabapentin or pregabalin, 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 and your withdrawal symptoms have settled. 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 divide the doses on 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. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin (200 to 300 mg of pregabalin)."
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 or antacids don't take it within 2 hours for the same reason (not sure about pregabalin).
Did you ever find out what your ferritin is? If so what was it?
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...
Hiya Jeremy, Just wanted to check that you know you don’t need to take Pregabalin separately as we do for Gabapentin. Just in case that improves things for you. I take 450mg at once 1-2 hours before bed. 😊
300 mg of gabapentin and 300 mg of pregabalin are quite different amounts. The equivalent amount of gabapentin to 300 mg of pregabalin is 1800 mg - 6 times the pregabalin amount.
I feel your pain 😔. It appears that nobody out there truly understands the pain we all have to go through. The lack of sleep is the worst. Persevere with the neurologist though. Fingers crossed for you. You are not alone x
I’m being played around by my GP too. And going privately does not guarantee success. I see Dr Fackrell privately in Bath. He suggested a month ago increasing my dose of targinact from 10 mg bd to tid!
Intercepted by the practice pharmacist, the refused to increase to tid saying this could be dangerous. They would only consider the standard bd dose. They refused to prescribe it and have escalated to a prescribing advisor. Of course the GP is backing them.
I have written two letters of concern. I don’t think that I’m officially in complaint yet but rapidly going that way.
They are sticking to rules, protocols and norms. Dr Fackrell has to prescribe for humans! They follow impeccable logic but equally little insight into how the nature of variability of biological systems and thus human beings!
Bah. I’m throughly fed up with my GPs who have little knowledge themselves and don’t wish to listen to doctors like Dr Fackrell.
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