I wanted to let people know of my experience with RLS, what I thought was augmentation, changing medications and seeing a Consultant.
So it all started when the 0.5mg Ropinirole I was on did not have the same effect. Doing my own research I considered that augmentation was happening. When I discussed this with my GP he I believe was bullied in to agreeing (by myself). So I was weaned of Ropinirole and went on to Gabapentin. Eventually I reached 3 times 600mg a day. Sadly this didn’t work.
On my next visit to the GP (and a different GP) I was prescribed Amitriptyline and given a programmed to come off Gabapentin and increasing Amitriptyline. On the day I was 100 on Amitriptyline I have the worst night ever. So I put myself back on to Gabapentin but only 3 time 3oomg which gave some relief.
My next step was to use my medical insurance to see a specialist and this has been a revelation.
• - Have you been on the drug treatment for at least a few weeks?
• - Have the symptoms become more severe since you started the medication?
• - Are the symptoms starting earlier in the day?
• - Do the symptoms come on quicker after the start of rest/inactivity?
• - Have the symptoms spread to other parts of the body? (e.g. arms, hands, trunk, head)
• - Is your regular medication dose no longer working?
2. Amitriptyline only increases RLS and give no support.
a. My GP was unaware of this
3. I have been put back on to Ropinirole.
a. Happy days I’m sleeping through the night again
4. RLS will progressively get worse so meds will need to be increase.
a. This explains why the 0.5mg ropinirole stopped working
5. Taking time off of Ropinirol gives the neurons some relief so I’m back to 0.25mg
6. The max dose for Ropinirole is 4mg, well below the 0.5mg I was on.
So the moral of the storey is that sometimes even doing your own research is not enough and you need to see a specialist. I love this site and the support it brings, I have relied on it so much in the past.
I just wanted to share my storey.
Love to you all
Simon
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SimonMorriss
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Well done: interestingly my sleep disorder specialist revealed he takes Amitriptyline himself for RLS - and it worked.
It didn’t for me, but then I didn’t give it much of a chance as the daytime fatigue was intolerable. Years ago I took it for effective control of insomnia, but now can’t tolerate it.
Hi Simon, your story resonates with me as I have been on Ropinirole for 2 years now. I felt my RLS was getting worse and increased to 2mg at night. I was also taking medics for Fibromyalgia which was giving me terrible night terrors. I managed to withdraw from that completely and reduced Ropinirole to 0.25mg felt so much better except RLS was keeping me awake every night. Ended up increasing dose to 1mg which seems to work ok. I still have breakthroughs during the day but I can sleep around 6 hours at night.
I have had RLS since I was a child and it used to come in waves. I think this is the same. I will be fine but then have a bad few days. I will try and reduce again at some point. For now it is working.
Hi Simon. You were on a low dose of Ropinirole and came off it. You are probably correct that you were not experiencing augmentation BUT Ropinirole WILL cause augmentation at some point in the future. It creeps up on you and you then find yourself on a high dose and unable to reduce easily.The 4mg maximum dose is only on websites because the world experts had a dispute. The US experts want the max dose set at 1mg. The UK and European experts wouldn't agree. So it remains at 4mg. As the US experts see thousands of RLS patients a year and know how common augmentation is, I prefer to follow their advice. UK and European doctors will only see a small number of RLS patients a year so do not see the scale of augmentation. Look at any RLS help forum and it is the main problem discussed. Don't increase Ropinirole above 1mg.
Augmentation happens when the D1 dopamine receptors scream out for their share of dopamine and cause an increase in RLS. This starts when the dose needs to be increased and before you know it, you're on 4mg and the RLS has increased in severity.
Ropinirole sucks but it's the only thing that works for my RLS and full body dystonia. Without is I can't even keep still, at all. But I just want you to know that if they increase over time, do not let it get to 4 mg. 4 mg, after a year, made me lose my mind, literally. I was in the mental hospital 3 times in 4 years. I started hearing disembodied voices, and then they became threatening and weird, often scary. I am backing down again and tings are more quiet, but at 3 mg, it's still there. So I have to constantly focus on the front of my brain, what's real, whats happening now and ignore the noise in the back of my head. It is exhausting mentally. But at least the clown, alien, invisible people are leaving me alone, for now. Good luck. Oh also do not stop taking ropinirole if on higher doses. The withdraw makes the imaginary stuff real. I mean it turns your delusions into reality and turns you into paranoid scizefrenic, then people think your crazy and don't uinderstand it's the medication and your not actually crazy. I'm just telling people my story whom are new to ropinirole. but yes 6 hours is good for sleep. When everything is working right I get about 5 to 6. Which when that is happeing I almost feel normal again and that is everything.
I weaned off Requip from 5 mg a night to Lyrica 200 mg per night due to hallucinations, people in my room and in bed with me and mania periods. I also developed a gambling addiction. I took Requip for 15-20 years but the awful symptoms developed only the past year and a half. There was a huge class action lawsuit against the manufacturer of Requip and Mirapex and people received compensation. Now there is a warning on the med. can cause hyper sexuality, gambling addiction and other mania side-effects.
I have no side effects on Lyrica 🤞🏻
Work with your pharmacist as well for med interactions.
Hi Maystamper 1. Thank you for sharing your experience which makes my issues look like a walk in the park. I’m so pleased for you that life is getting back to something like normal.
Hi Simon. Ive had restless legs fo about 45 years. I’ve been on Ropinirole for many years and Nupro patches prior to that, both Dopamine Agonists Ropinirole started as low dose but as got worse was prescribed higher and higher dosage ending on 6 mg / day. I joined RLS-UK and attended a zoom AGM where I was advised to withdraw very slowly from Ropinirole which I have been working on since 23 October 2022 and am now down to 2.5mg / day. Life is difficult to say the least and the withdrawal from Ropinirole is ruining or has ruined my quality of life. Sleep is hard to come by my whole body twitches during very bad bouts. Rational thought is difficult as sleep deprivation causes me to have difficulty in working out how to do simple tasks like making a cup of tea, so I pace around at night actually falling asleep on my feet waking up when I start to fall, luckily I’ve never fallen over yet.
I’m not writing this for sympathy or to frighten anyone but just to advise you of the real long term effects of Ropinirole. Joolsg is correct that there is only one dose of Ropinirole that doesn’t cause augmentation and that’s ZERO mg. Obviously as in all things there are exceptions and some people will get on well with Ropinirole but the majority won’t and will have to spend many months painfully withdrawing. I was on a very high dose that exceeds the latest recommended, you are not so I pray that you will continue to tolerate Ropinirole and find rest but please keep an eye on your symptoms.
Hi Hip-hop, I just wanted to offer my short as I've been where you are and can totally empathise. I was taking up to 9mgs of ropinirole. Thank God I'm off it now and have been for about two and a half years. You're going through hell atm, but life will be better once this wretched drug is out of your system. Keep going. You'll get there!
Hi RLS- insomniac. Thank you for your support and you did very well, 9mg is a lot to withdraw from and didn’t think such a high dose was ever prescribed. Onwards and upwards as they say.
Thanks and the same to you. Sadly, my experience once again highlights the complete ignorance of the medical profession in their lack of knowledge in treating sufferers with severe RLS.
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