I have just created this account and I just want to share my story and see what you think about it (I did read a lot of threats in this forum and I already see that, unfortunately, I'm not alone..)
I have been diagnosed with RLS in 2007 and the neurologist prescribed me with 0,250 mg pramipexole (2x0,125) 2 times a day (0,500 mg total). Since I'm not a big fan of medication, I quickly decided to only take the 0,250mg in the evening. This went pretty well for years. I noticed my symptoms were way worse when I took my medication too late, but I just thought this was part of the process of RLS.
This year, I noticed the 2 pills weren't enough 50% of the time. I take them 2 hours before I want to sleep. So I take them at 20:30 hours, when I want to sleep at 22:30 hours. I notice the dose isn't enough, so at 22:45 hours I take another pill, finally sleeping around 0:00 hours. This is annoying, since I lose some hours of well deserved sleep.
I got approval from my doctor to get the dose up to 3, but within 2 months, I notice that 3 isn't enough and the symptoms are even worse than before: intensity is way higher, my arms are now also involved in the sensations, I'm dizzy all the time during the day.
Then I started reading about "augmentation", alternative treatments (IV Iron and getting off Pramipexole). Man oh man, I'm seriously scared right now..
Not only for the side-effects of getting off Prami, but how would I handle those on top of the regular RLS symptoms.
Current symptoms: high intensity after 15-30 minutes after taking Prami, less effectiveness of Prami, leading to the normal RLS symptoms, dizziness during the day, all day, every day since a couple of weeks (after increase the dose from 2 to 3 pills)
Does anybody have any advise, experience, best way to approach a GP?
I live in The Netherlands, so this might impact possible alternative treatments.
Thanks in advance and I wish you all the best if you can relate to my story, because it's pretty shitty
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DizzyDuxx
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Hopefully Lotte will come along soon. She's in the Netherlands and may have details of a knowledgeable doctor there.You're definitely suffering severe augmentation and the only solution is to very slowly reduce the dose over a minimum of 3 months. The higher the dose, and the longer you've been on Pramipexole, the longer you should take reducing. In your case, I think 6 months is the minimum time you should take to reduce.
Paradoxically, symptoms often settle or improve as you reduce but don't be fooled- they start again so you have to keep reducing.
Raising your serum ferritin above 100 will help both augmentation symptoms and RLS for the majority and I know Lotte managed to get an iv iron infusion so it is possible in the Netherlands.
Once you're down to the last dose, you can start alternative meds like low dose opioids or pregabalin or gabapentin.
It's trial and error to find which meds will help. However, as you've been on Pramipexole for such a long time, you may find pregabalin and gabapentin don't help. Dr. Buchfuhrer ( a US expert) has mentioned this and it's certainly the case for many of us.
Low dose opioids are safe and highly effective- particularly Buprenorphine(temgesic).
I know Manerva has a schedule for reducing Pramipexole and I'm sure he will share it soon.
I was on a similar drug, Ropinirole, and I know how to titrate down from that.
Do not take other dopamine agonists like Ropinirole or the Neupro patch ( Rotigitone) because you will augment quickly on those.
Since I only started with 3 pills (0,375 mg) 2 months ago and take 4 pills since this week basically, I will try to:- get an appointment with a neurologist asap
- explore IV Iron
- explore gabapentin
- reduce intake of pramipexol to 3 (but maybe 2 even..?)
- prepare for the worst (a room with cushions on the floor, walls and ceiling), take some time off work
- see what happens and build off more
But seriously.. personally, when I take my pills too late or they don't work, I lie in bed, kicking literally every 30 seconds (my arms too btw)... I can choose not to move my legs and arms, but that feeling is so annoying, so "there" that it makes me crazy. I really really really cannot sleep with that creeping feeling in my limbs.. How did you manage to function? Could you eventually get some sleep? Were you a zombie? How did you stay "alive"???
Hi Dizzy I can completely relate to you and sympathise it really is awful and affects my life completely! I don't know how my husband puts up with me I am constantly tired and get about 2 hours sleep a night. I look after my one year old grandson all day 4 days a week and work in the evenings doing clerical work from home. My life is not my own and I absolutely dread going to bed on a night. Getting to see a gp who a) understands and b) who cares is a complete nightmare. I am still trying to sort this out. However I have noticed if I dont take my amitryptaline I do get a reasonable few hours sleep which is better than 2. Hope you get yourself sorted. Take care and as you will see there is lots of advice on here which I am very very grateful for
There's quite a few things that might help you, based on what you've written here. I may have replied to you before, but I can't remember where. Also, I'm afraid, I can't remember what I wrote, so I hope I'm not going to to repeat myself to you, or worse still, contradict myself.
The most obvious point is that you're taking amitriptyline. I don't know why you're taking it, but it will be making your RLS worse. You might want to think about weaning off it.
Another point is that RLS sufferers tend to develop "phobic anxiety", which is getting anxious about a particular thing.
A classic example of this is what I call "bed dread". A fear of going to bed. This causes high levels of arousal (anxiety) exactly at a moment in which arousal is the exact opposite of what you need.
If you can reduce your bed dread then, it may help you in getting to sleep more easily.
Note : this is not a black or white solution. Reducing the phobia will help some, but there are other factors too.
To help prevent bed dread there is a "sleep hygiene" measure called the 15 minute rule. This means if you go to bed and don't fall asleep within 15 minutes then get up. Do something for a while, then try again.
There are two ways in which phobias are treated. One, in this case inappropriate, is called "flooding". The more appropriate one is called "systematic desensitisation".
I can give you more detail of this if you're interested.
I imagine you do know that anxiety can cause insomnia and exacerbate RLS symptoms. Stress management can be a key component of deallng with RLS generally. I guess no doctor will have ever told you that.
Overall, it doesn't sound as if your RLS is under control, in which case your treatment may benefit from being reviewed.
Hopefully you're aware of the 4 main principles of dealing with RLS
1) iron therapy
2) aggravating factors
3) medical treatment
4) cognitive and behavioural strategies.
Your GP can help with 1) and 3) at least.
I'm sorry that you seem to have a problem with GPs. Have you thought what you can do about this?
Manerva you have been so helpful to me an others on here. I'm very new to this forum and and so very grateful for all the advice I have been given. I just want to say thankyou to all that have mentioned amitryptaline because I had no idea it would affect my RLS in the way it does. I have only been taking it for a year because I suddenly developed a nerve issue in my leg. This is when I first started taking Gabapentin 300mg 3 x per day. When the issue worsened I was given the amitryptaline to have at night. Thankfully the nerve pain did subside. Dr's don't know why I have it and it flares up from time to time. When it's really bad I was prescribed zapain to help as well although I don't take this on a regular basis. Since Sunday I have been weaning myself off the amitryptaline taking it one night on and one night off. I know it's early days but the nights where I haven't taken it I havent had no where near as bed RLS as I do when taking it. Perhaps it's all psychological but ill take it. Slept for 6 hours straight last night and today I feel much better in myself! I hope this is my solution however I will be looking at the iron issue. Many years ago after having a routine blood test my doctor found that my platelets were very very high even though I had no illness or symptoms I spent 2 years back and forth the hospital to ascertain why this was. In the end it was decided that this was normal for me and that was it. I have no idea whether any of that is related to my RLS. Even thought I have suffered for years its only in the last 2 years that it got so bad. I will keep you posted as to my progress and once more thank you for your help 😊
Hi Susie I have no idea tbh. But I have found on the nights I don't take it I dint suffer as much
Its sounds shitty. but - you are definitely not on your own.
This is classic augmentation.
I'd say the first thing you must do is to wean of the pramipexole. When you do reduce it you will experience withdrawal effects. This can't really be completely avoided, I'm afraid. I can say however, that going through the gauntlet of withdrawing from pramipexole is well worth it.
Withdrawals can be lessened by reducing the dose slowly. As slowly as you can bear.
When I was in your situation I reduced the dose in steps of half a 0.125mg. In my case, I reduced once every 4 weeks. You may wish to do it faster than that if you wish, but, I'd say no less than 2 weeks.
The withdrawal effects should only be temporary, (no more than 2 weeks) and as the dose gets lower augmentation symptoms should get less.
The standard alternatives to a dopamine agonist are either pregabalin or gabapentin. I belive these are available in the Nethrlands.
Lotte, another member from the Netherlands should be able to confirm this.
I started taking gabapentin before I stopped pramipexole and still take it with good effect.
Please also read comments about Iron therapy and RLS and aggravating factors. I have written about these several times today myself. Hence you may wish to read other threads posted today.
Thanks for your quick reply. I have an appointment with my GP later this week and will schedule an appointment with a neurologist.
The Withdrawal from pramipexol seems hard enough, let alone the regular symptoms of rls. So hopefully I have a good working alternative so I can build off the prami. I will look into that.
But how frigging stupid is augmentation: increase symptoms, leading to more meds, leading to more symptoms..
As you were dx at such a young age, were you taking any meds that may have triggered RLS? Antidepressants and anti histamines are the main culprits. Also anaemia can cause RLS so getting full panel bloods is essential. Serum ferritin should be above 100, preferably 250. Best way to achieve this is by an infusion, but first, get off the Pramipexole.
When I was first diagnosed, I did some research about rls, quickly finding it was caused by a lack of dopamine.
My own guess is that is is caused by my (recreational, 1 time a week for a couple of months) use of xtc..
I know a lot of people who use way more for years and years and don’t have anything, but that is just my guess..
Once I have a good alternative to relieve the rls symptoms, I will definitely step away from prami.
The thing is that the symptoms are really bad, and they are mostly caused by prami by the looks of it.. but stopping will make things worse (for now at least), while continuing will make it worse too.. paradoxxx
I promise that once you're off Pramipexole the intensity of the RLS will be so much better. Augmentation creeps up on you and you don't notice how much worse it has become.Withdrawal for me was hellish. Over a month of constant, all over body RLS and no sleep at all for 4 whole days and nights. It was horrendous but once through it, my RLS was much less intense and only in my legs.
I was able to sit still in the day for the first time in years so stick with it.
Not everyone has a difficult Withdrawal, you may have a much easier time.
Certainly will cause damage to dopamine receptors, but putting you on Dopamine agonists has also damaged them.
Many people find that once they're off DAs, their RLS is so much better that they don't neec meds. You may be one of them.
Stay strong and go slowly. Your life will be so much better once off Pramipexole.
I found cannabis very helpful during withdrawal so try a sedating strain. At least it's legal there.
I'm genuinely happy for you Joolsg. But if you gradually build off, do you get the withdrawal symptoms (for you 4 days without sleep) every time you decrease the dose? That will be a nightmare..
I know for sure my symptoms increased since the start of taking Pramipexol, I just didn't know the cause was the Prami.. I just thought it was the RLS getting worse. I only started to connect the dots this week, since I got from 2 pills to 3 (after 10 years) and getting to 4 within 2 months.. I just knew this didn't add up.
Cannabis makes me nauseous like crazy, so that might not be my first choice to be honest, but you are right: it is legal here haha.
How did you manage to function during the withdrawel? I have a wife, a beautiful son of 1,5 years old and I kind of have to work too..
The worst of the withdrawals happens when you drop the last dose. Some find the RLS worsens with each reduction in dose -but it settles. You wait for it to settle before reducing again.I'm retired so didn't need to worry about work but you should arrange 2-3 weeks off work for when you drop the last dose. That's when symptoms are the worst.
Most people get prescribed opioids to help the withdrawal symptoms. Tramadol or Oxycontin. I used 50 mg of Tramadol every 4 hours for the first week of withdrawal. However, only sedating cannabis helped me.
Take it slowly and tell your work bosses about it. If it would help, here's the withdrawal schedule from Johns Hopkins Hospital in the USA ( they don't recommend any opioids to help with withdrawal as they also work on Dopamine receptors and Johns Hopkins aims to see baseline RLS free of meds). I think this is pretty harsh as you are without any meds using this schedule, but most people start taking another replacement med like pregabalin about 3-4 weeks before the last dise of Pramipexole.
Yeesh. That does look scary. Maybe I was just lucky, but my doc started me on gabapentin after the ropinerol I was on quit working. I did not know about augmentation at the time and apparently the doc didn't either. I took both for some time. After several months I saw a neurologist/sleep doc and he increased the gabapentin a bit and had me simply stop the ropinerol. I had been taking 2-3 mg per night. I had no side effects or withdrawal symptoms. Go figure. I should add that my more common RLS symptoms are quite mild and my main issue is PLMD which keeps me from falling asleep (twitch, twitch) and wakes me early in the morning (twitch). My experience of starting gabapentin and abruptly stopping ropinerol seems to be quite an outlier. I would have no interest in the Johns Hopkins approach unless I also had a huge side serving of cannabis. Good luck.
It is. But you can do it. I have MS and was 56 when I went through it. I fell over a lot and nearly didn't make it. However, I knew it was the only way to stop the horrendous, constant, all over body RLS. My husband stayed up with me for the worst 4 nights when I didn't get any sleep and my body was twitching violently every 20 seconds.
Massage helped and walking constantly.
I used illegal cannabis on night 4 and it gave me 30 minutes of desperately needed sleep.
There are many of us who have gone through it. Some suffer badly, but there are a few who didn't have any withdrawal symptoms.
The schedule doesn't allow for any alternative meds. Many do take opioids like tramadol 50mg every 4 hours or Oxycontin to help with the intensity of withdrawal. Many also start gabapentin or pregabalin 4 weeks BEFORE the last dose of Dopamine Agonists and that seems to help.
Once through withdrawal, your RLS will be far better. Less intensity and only affecting your legs.
The secret to withdrawing successfully is to do it by tiniest increments possible, as slowly as possible. Think backing away from a very angry sleepy tigress 😵. You don't want her to see you moving.Cut pills, allow your body to adjust to the new pain levels and mind yourself. Eat healthy, keep up vitamins.
Explain to your bosses your situation, and that you will be groggy sometimes, but will make up any short time. ( If all that is feasible)
Hi Dizzy, late at night and about to go to bed. I can ! Joolsg has given you very good information. As will Manerva I am sure - although I didn't yet read his replies.
Let me add this paper here, that is a very recent overview of RLS, the knowledge about it and its treatment, including augmentation. mayoclinicproceedings.org/a...
I can/will pm you tomorrow. As Joolsg said, I am also in The Netherlands, Groningen area. I have a fairly knowledgeable neurologist who works out of Groningen and Zwolle. There are several other good ones. Also, if your gp is willing to listen and read, you may not need a neurologist.
Maybe for tonight, if you haven't yet taken all your pills, take only half a pill less. Or simply take your normal amount. You may need a bit more preparation before reducing. I hope you do get some sleep tonight and tue symptoms are not too bad. I remember too well how they were...
Hi Dizzydb. There are lots of help and you've been given brilliant advice above. I am on here though with a slight variance (PLM). Good luck, we're all with you.
Thanks Spurdog! So nice to get in touch, even though your situation is different. Although PLM (Periodic Limb Movement) is, in my case, a big part of my RLS symptoms.
The very annoying feeling, creeping up in my legs (and arms) with a short relieve when I move my limbs. Yes, I can choose not to move, and the feeling will eventually fade away, only to get back 30 seconds later. Hard to explain to people who don't have it.
I always describe it as: having an itch somewhere, getting worse and worse. You can choose not to scratch, but eventually, you just have to. That feeling, every 30 seconds..
How does the PLM affect you and what do you do to manage?
Hi DizzyDbI think I am very fortunate. There are ppl on here in so much worse difficulties I count my blessings.I had my Prami ramped up to 4 per evening (4 x 0.125MG), not entirely sure why. Have currently reduced to 2.5 tabs an evening.
Considering withdrawal effects I might make my next half tablet reduction on the 20th of the month (4 weeks apart). I am trying to find out if there is good news on the horizon. I really don't want to curse myself in pre-empting (The kiss of death). Certainly staying 2 tabs only is a stable point.
Sorry to hear you suffering My story is similar since last year I came off premipoxle
I tried so many different drugs pregablin ,Rotingine patch’s,now I am on Gabapenton I take 300 mg around 8 pm then 11 o clock or 10.30pm but it wears off after two or three hrs then my suffering starts finallin morning around 3 or 4 am after I am really tired I go for sleep fir four hrs this is everyday story.some night I take two cocodamol 30 mg to have good sleep.
Hi, That sounds bad I really hope there will be a good solution (medication?)
For now my focus is getting off the Pramipexole, only to cross the whole "what to do now"-bridge later.
I have heard many people already taking on different medication (trial and error) which is horrible, for it impacts you sleep and basically quality of life.
Lotte shared an interesting article which I also found. Might be of some use to you too!
Hi DizzyDb, I am Dutch like Lotte but have been living in UK for more than 40 years. I feel for you. I was on Pramiprexole for many years (on 6 a day at some stage) until I discovered I suffered from augmentation in 2017. Since then with the help of my Neurologist, switching first to Ropinerole (made me feel awful) and then to Rotigotine Neupropatch (starting on 0.1 mg and slowly increasing to 0.3 mg) helped for a year or two. In the meantime he also put me on 1/2 of 0.5 Clonazepam to help me sleep and I have been taking it since 2018 at 0.5 mg). Then when the Rotigotine stopped being effective, I accidentally discovered that taking co-codamol or co-dydramol (2 tablets of 10/500) in addition to the Rotigotine made a real difference. To prevent constipation from the Codeine I eat soft prunes with my breakfast and in the evening take 1 high strength Senokot. In the meantime in 2019 I thought I ought to try Gabapentin (everyone was talking about it) so again helped by my Neurologist I weaned myself off the Neupropatch (not a nice experience) and started taking Gabapentin, slowly increasing to 2x600 mg, only to discover it did not really help my RLS but worse, it affected my eyesight. In March 2020 my Neurologist then put me on 0.26 mg of Prolonged Release Mirapex (I take it at night and am not going to increase it). I have now added my 2 co-dydramol again and for the last 17 months I have been ok on my combination. I still am a bit restless in the evening but sleep like a log at night. I still take the Clonazepam.
My theory is that the Codeine I take in the co-codamol is only 20 mg and I can’t increase it because the combination with the paracetamol prevents me from that. I really would like to avoid going onto opioids that have a much higher morphine content. 0.1 mg of Buprenorphine contains 5 times more morphine than 20 mg of Codeine.
I am also very aware of my triggers and try to avoid them.
I came off pramipexole earlier this year after a very long and slow reduction, often cutting 0.88mg tablets into 4s and taking 4 weeks between reductions. It wasn't too bad at first, then got worse, but the final reduction was much easier than I feared. Once I was near the end, my day time symptoms, which had been pretty horrendous, disappeared. In the meantime I started on gabapentin.
I hadn't quite believed that things really would improve once I'd stopped pramipexole (despite the reassurance of people on this forum) but they really did. I'm still revelling in the joy of not getting the dreadful daytime symptoms I was having. Nights can still be problematic, but I usually manage 3-4 good night's sleep a week.
I'm still taking 600mg gabapentin before bed, reduced from 900mg. I started taking gabapentin whilst cutting back on Pramipexole but managed without anything else.
So weird to hear that 3-4 good night sleep are actually better than you were ON the medication. Glad you managed to get off it. You did it really slow and controlled, so looking at other posts, this is the way to go. How did you manage to cut those super tiny pills into 4 pieces haha
Can you tell me more about “It wasn't too bad at first, then got worse”
I found reducing from 4 tablets to 1.5 not too bad, but then it got really bad so I stayed where I was for quite a long time. When I tried again I found it wasn't as bad as the first time. I suppose I'd allowed my body to really get used to 1.5 tablets before cutting down further.
I found a pill cutter cut the tablets in 2 more or less OK but cutting each half into a quarter was hit and miss and some pieces ended up bigger than others. At this stage it was largely guesswork and I was left with lots of tiny pieces which I kept just in case I needed to taper off even more slowly at the end. As luck would have it I didn't need them.
I got very tired, but found that I could ward off the truly horrible RLS feelings (which are far worse than tiredness) by being gently active e.g gardening, walking, floor washing until they'd gone. In the night it was floor washing too but also hot baths, and rolling around on a pilates ball while trying to watch TV.
I have had the augmentation, nightmare, but sleeping was something that I could only dream of, I decided that I would give it another go, but I only take one every other night, so am trialing it along with Clonazepam, upping that on the nights in between.Hope that this helps you a little.
Quick questions in preparation of decreasing the dose.I am currently on 4x0,125mg Pramipexole and plan to decrease by 1/2 tablet per 2-4 weeks.
Last night I caved after lying in bed for 3 hours, going crazy every 30 seconds by "the feeling".
So my questions are:
1. How long will it (approximately) take for my body to get used to the new, lower dose? Aka How long will I not sleep? And additionally: will they last the whole night or just a couple of hours? And what to do when it happens? Any tips?
2. Will the lower dose work as effectively, after the body gets used to the new dose? Right now, 4 pills work great and I can sleep uninterruptedly and fall asleep without any issues. I won't like losing that haha. The reason I want to decrease is that my dose increased by 200% in the last 6 months and I have a lot of augmentation, which is likely to only get worse when I kee increasing the dose.
3. Will every decrease in dose lead to worsening symptoms for the xxx period mentioned in the first question?
General update:
- Waiting on the blood results (should get them Tuesday next week)
- GA did know RLS, but wasn't really aware of the "latest" research and treatments. Not sure how to proceed with her. She seems pretty friendly and helpful. Think she could help with with prescription of other meds if I need them. I will see if I can get her to read more into RLS
- GA will provide me with an appointment with any neurologist I want, so if anybody has any names for a good one (in The Netherlands )
Thanks for all your reply's, support and sharing your stories.
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Glad to hear it worked out for you relatively well. 
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