I have had intermittent RLS for most of my adult life which increased 10 years ago and became severe. I am taking Ropinerole 2mg at night with an extra 0.25 in the early hours plus occasional 0.25mg during the day if I am resting, travelling etc. I don’t know if I have augmentation but my RLS becomes severe for N hour soon after taking Ropinerole then settles down enough for me to sleep several hours. I take the 0.25 top up when I wake up and when resting or travelling as prevention.
I have read so much about augmentation being inevitable and the awful stories of withdrawal I know I should try to come off it. However I am currently having a difficult time as I am caring for my terminally ill mother in a different country to my home. Is it best to keep the status quo until augmentation starts or go and see a temporary GP and request gabapentin? Also do you have to come off Ropinerole completely before commencing gabapentin or pregabalin?
I couldn’t currently cope with sleepless nights whilst having to care for my mum but am scared of augmentation.
Thanks in advance for your advice. X
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Helthom
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I'm sorry about your mother. Unless your mother has a life expectancy of only a few months, I would advise you to start weaning off it. I gave you advice of how to do this 2 months ago. healthunlocked.com/rlsuk/po....
You never answered whether you had your ferritin tested. If not that is very important and is the first thing one should do when they have RLS and is especially important when you are suffering augmentation which you are. If not I urge you to do so and I gave you directions in the same post 2 months ago.
Forgive me for not replying but life is rather hectic. My mother’s life expectancy is only months so it would be very difficult to start to withdraw when life is difficult.
I am taking ferritin at night but cannot have a blood test until I am back in France
Can you please tell me what makes you so sure I am augmenting when it relieves my RLS. What are the symptoms of augmentation? And please can you answer whether one can take gabapentin whilst taking Ropinerole. It is difficult to go back to see previous posts and answers.
I'm sorry to hear about your mother.Ropinirole causes drug induced WORSENING of RLS. That is augmentation. Look at RLS-UK website and videos on augmentation.If your RLS has become more severe and intense, starts earlier in the day and moves to other body parts, like your arms, that is augmentation.
The fact you take an extra 0.25 in the early hours or to rest or travel in the afternoon is a giveaway sign.
It is a frightening realisation.
For now, I suggest you stay on the doses you are taking so you can concentrate on looking after your mother.
There's NO point adding pregabalin or gabapentin to your existing Ropinirole now because it won't stop the breakthrough, worsening RLS. Pregabalin/ gabapentin should be started about 4 weeks before your last dose of Ropinirole.
The best you can do while looking after your mother is arrange those blood tests. If serum ferritin is below 100, then you could ask for an iron infusion to raise brain iron faster and help to reduce augmentation symptoms.
If your RLS is bad, try NOT to increase the dose. Instead, take codeine or solpadeine with codeine occasionally until you start the real reduction on your return to your home.
To repeat what Joolsg said. 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.
1) You indicated that it had spread to your arms. 2) You need to increase the dose. 3) You are having to take it during the day 3) There is a shorter period of rest before needing to take it again at night.
I answered your question about taking ropinirole and gabapentin in my previous post.
Just click on the link I provided which will take you back to the previous post and answer.
Jools and Sue have given great advice but just to give another perspective. I experienced clear augmentation after having been on pramipexole for approx 12 to 18 months. I didn't have the slightest difficulty transitioning from pramipexole to pregabalin. And pregabalin worked from day one.
I started off at 150mg of pregabalin then had to increase the dose to 300mg over time. I have been on that dose for at least 5 years. I supplemented it with between 0.125 and 0.5mg of clonazepam mainly for insomnia. I am currently weaning off clonazepam as it's a benzodiazepine and I have read that they negatively affect sleep and the GABA/glutamate balance. I also tried clonidine recently which was great at helping me get to sleep but left me feeling light headed and dizzy.
Thank you Sue and Jools for your advice. I’m sorry if I repeated a question I have previously asked which anappears to have irritated Sue, but even when I click on the link you supplied in your answer I cannot find my initial post. Maybe I’m just thick!
My symptoms currently aren’t as severe as they used to be - I have always had symptoms when resting or travelling, even before I started Ropinerole (even when I was a child) and at the moment Ropinerole is relieving my symptoms, therefore I will continue with my current dose. I understand the reasons for coming off a DA but I just can’t face going through some of the horrendous experiences I’ve read about on this forum, whilst nursing my mum. It fills me with absolute dread.
However once this is over, I’m back in my own home and able to see my own GP I will take your advice. I’ll continue with the ferritin tablets as this maybe what is also helping but I can’t have a blood test until I get home.
Hello I am sorry about your mother and I can understand how difficult it must be for you. If you click on your picture it will take you to your bio and you can see all the posts and comments you have made in the past .It shows this is your first post but you have commented and its on there that you was given some advice. So if you click on comments/replies you will see your past comments.Wishing you strength at this difficult time and sounds like you would benefit from a hug too so sending a virtual hug x
Hi Helen, I know how exhausting it is looking after a loved one from far away. Take care of yourself as well, play some soft music, or meditation sound tracks. Hang in there. Best wishes. 🤗
Take Sue’s advice and get the Gabapentin. I had no withdrawal from Ropinirole (it varies from person to person). The sleeplessness- have it every night and having cared for my wife for 3 years as you are for mum, it was difficult but you will do it out of love. You can rest later. My heart goes out to you.
If you can get some oxycontin( a low release opioid ) it may give you some relief until you can begin withdrawal at a later date. Certainly helps me. Good luck.
If you come off ropinerol, I urge you to do it slow by decreasing your dose in small incrimates. I didn't and had a terrible withdrawal for a week. You can take gabapentin with it. After reading a lot here, I tried some things that worked. I gave up caffeine, went to decaffeinated coffee, don't eat chocolate after dinner. For me, I found falling asleep on my stomach greatly decreased the severity of feeling the RLS. Now I take 2 gabapentin with dinner. Then at bedtime I take one gabapentin and one Trazodone 50mg. I now sleep like a baby. Getting off ropinirole was the best thing I did.
I can verify your advice- I, too, discovered that switching to going to sleep on my stomach often helps when I have triggered my symptoms, whether by under/over exercising, eating late, indulging in sweets, or other lapse. It's another coping trick; it usually works.
I had taken both ropinirole and gabapentin at the same time. My RLS pain was very severe and I kept taking more ropinirole. I thought I was at the end of ropes in life. It took me nearly a year to get off the ropinirole but well worth the pain I endured as I now have controlled RLS and sleep 6 plus to 8 hours a day. Keep the faith that your RLS will get better but do it slowly to get off the ropinirole. You do need a good medical provider to help you.
For all of you wrestling with RLS and/or apnea, please get some hope by reading and watchingh an interview by Dr. Joseph Mercola of Fr. Stasha Gominak (YouTube) titled "Promoting Sleep by Optimizing D Levels: A special interview by Dr. Stasha Gominak." She gradually uncovered a protocol that will address the cause of RLS. Following that protocol has eliminated RLS for many. It is non-pharma, is based on nutrient deficiency (primarily vitamin D). It is an interesting read, and I have hope again to recover from RLS.
I’m so sorry to hear about your mum. Also I know how awful RLS is! I am currently down to 1.5 mg roprinolol and 300mg gabepentin and it’s working well. I’ll try to go down to 1mg in the next 2 months while staying on Gab. 300mg. Good luck!!
Hello Helton. I’m so sorry that you have to cope with the double trauma of Ropinirole Augmentation, for I’m sure that is what it is and looking after your rather poorly Mum. Sue said she gave you advice a few months ago on withdrawing from Ropinirole. I’m finally Ropinirole free after taking 6mg a day, it’s taken me 13 months of a very slow reduction but I feel a great sense of achievement and just waiting for the Pregabalin to kick in and finding the correct dosage.
May I suggest that you take whatever advice Sue gave you in that post, she is a great source of very sound advice as are many members of this forum. Obviously the choice is yours and yours alone and you have to balance that with looking after your Mum, but the sooner you start reducing Ropinirole the sooner the augmentation will start to ease so please don’t be terrified, like the skin and hair care advert says ( Your worth It )
My very best wishes to both you and your Mum. HipHop1972
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