Hi all, new to this site and though I would share my recent experience. I take 2mg of ropinerole nightly to control my restless legs. The ropinerole comes with side effects for me, initially I started vomiting and my GP thought the ropinerole was causing me to create too much stomach acid so added omeprazole to my prescription. Recently I have woken up at night because acid fills my mouth, so back to the GP I went.
My GP was concerned that the ropinerole could be causing these issues, or I had another medical condition that needed investigating, the only way to find out, stop the ropinerole and see if the symptoms subsided. I was advised to go 'cold turkey' and told you may get a bit tired but it wont kill you! I was also told to keep a diary.
Night 1. I had woken up at 4am the night before so was pretty exhausted anyway. Went to bed at 11pm and after 20 minutes the legs kicked in. I tried different positions, even kneeling and leaning forward to put my head on the pillow, hoping that my body weight on my legs would help. The only thing that helps when my legs are on full speed is walking so I spent a lot of the night wandering the house. Did lots of stretches as advised on websites. Took a hot back at 3:30am, packed my legs with bags of frozen fruit at 4:30am. Drank a bottle of tonic water.... nothing worked. In between all this I would periodically lie down in an attempt to sleep, by 6:15am I gave up and went to work. That night didn't register on my fitbit as a night with sleep.
Night 2. I picked up a prescription for sleeping tablets and took 1 at 7:30pm. Felt a bit woozy so went to bed at 8. By 8:30pm I was wandering the house, by 9:00pm I had sent my daughter a couple of 'odd' texts and by the time I sent her a photo of what I believed to be a lizard trying to come through the cat flap she turned up on my door step. When she read the leaflet that says ropinerole should not be stopped as it can lead to confusion and coma she panicked and took me to the hospital, I was confused, unsteady on my feet and didn't have a clue what was going on. By the time we finally saw a doctor the sleeping tablet had worn off and I was lucid. The doctor had never heard of RLS or ropinerole and sent us home saying we should follow my GP's advice. My daughter left at 1:00am. I tried to sleep, I got up and stretched, I walked about and at around 3:30, through sheer desperation I took another sleeping tablet.
Everything else is a frightening blur! The sleeping tablets may have worked on my brain, but the RLS kept my body awake. I kept finding myself in places but had no idea how I got there. I found myself standing on my bedroom windowsill behind the curtains, I felt something bite my feet and thought I was being attacked by tigers, I got trapped in my bedroom, I was facing a blank wall and couldn't figure out where I was, I turned and realised I was in my bedroom and then suddenly I was facing the blank wall again and so it went. And then suddenly there was a crash and I was upside down on the floor downstairs and tables and lamps were strewn across the floor. It was 5:30am, I went to the cupboard and took a ropinerole, I finally slept. My diary entry the following morning read "I can't do it, I'm taking ropinerole, I can't find the tigers and the water is poison". I have no memory of writing it. To say I was scared would never explain how I felt.
I have been back to the GP and a raft of blood tests have been ordered and I am being referred to a neurologist. For now, I am sticking with the ropinerole and just hoping that some major advances are made in understanding and treating RLS.
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nosleep1969
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First off tell your doctor to read the Ropinirole patient keaflet.
Never stop taking a dopamine agonist suddenly. This has to be done gradually. You know that now.
It's true that Ropinirole may cause stomach upsets, but it may be that you already have stomach issues and the Ropinirole is exacerbating them. Waking up with acid in your mouth suggests reflux, lying down flat encourages this.
The "sleeping tablet". What was it called? It sounds like one of the short acting "Z" drugs. these are great because they wear off fast so you're not drowsy next day. However, they can cause confusion and even sleep walking, especially zolpidem but zopiclone is another. That may be the cause of your experiences.
Benzodiazepines, e.g. Clonazepam aren't so toxic, but they do take longer to wear off.
On top of the sleeping tablet, ropinirole withdrawal you're right, sleep deprivation can cause cognitive disturbances including visual hallucinations.
Good that you're going to see a neurologist. I do suggest however you find out as much as you can about RLS treatment. Neurologists aren't necessarily particularly knowledgeable about.RLS.
I also suggest you read up about the longer term consequences if taking a "dopamine agonist" such as ropinirole, (pramipexole or rotigotine). These drugs can lead to loss of efficacy, augmentation and Impulse Control Disorder. Augmentation is seriously unpleasant. Some doctors now try other medications before a dopamine agonist because of this.
Hi, thank you so much for your reply. I think the sleeping tablet was something like ziplicone 7.05. I definitely won’t be stopping the ropinerole again. I’ve joined this forum in the hope of learning more, although I have to say, having read some of the posts on here I’m pretty terrified.
If a GP can give such poor advice, & a casualty doctor can say they’ve never heard of RLS or ropinerole, how can we sufferers get the support we need. If neurology isn’t the route to take, do you have any suggestions for further help?
All that Manevra has said to you, so sorry you went through such a nightmare. What many RLS sufferers have found they had to do is learn all they can about RLS and the meds, so they have enough knowledge that doctors dont have. Then you can take that knowledge and educate your doctor. Good luck.
It's safe to wean off ropinirole, but you must do it gradually. I think your problems were more due to the Zoplicone than the ropinirole.
You can continue on ropinirole, it may serve you well for some time. You do need to be aware of the longer term risks however. I used to take a dopamine agonist and I don't recommend them as the first drug to try.
A neurologist may be of some help. Mainly however, as Elisse says, you have to educate yourself about RLS. This site is an excellent source of informatiion.
There is also an excllent book you can buy
Clinical Management of Restless Legs Syndrome 2nd edition
by M.D. Lee, Hochang B., M.D. Buchfuhrer, Mark J., et al.
"Clinical Management of Restless Legs Syndrome 2nd edition" is getting a bit old and even Doctor Buchfuhrer has changed his mind on the first line of attack. Last time I heard he was saying that getting the ferritin up to 350 should be the first thing your doctor does. His opinion was based on the experience of the RLS group at Johns Hopkins Hospital in Boston (I think)
Perhaps we should all send a petition asking him to publish a third edition with the latest news. It might be effective if we all put down a deposit for the third edition.
In the UK, most medical schools do not teach anything about RLS ( other than a few comments about it causing unpleasant sensations). It is why we have to educate ourselves.
Read everything you can about the condition and especially about dopamine agonists, augmentation and withdrawal.
And write to your GP and mention that going ‘cold turkey’ from Ropinirole is not advisable- withdrawal symptoms are horrendous. Copy the diary and send it to the surgery! A simple review of the med leaflet and the prescribing textbook would have told the GP that these drugs cause serious side effects and should never be stopped cold turkey.
Sorry to read this, I had a very similar experience when coming off Pramipexole (same type of med as Ropinerole ).I was given Zolpidem (sp? ) and had a strange night of doing very odd things. Over and over I found myself walking into walls, I put a microwave meal in the oven but luckily didn't turn it on. I put socks down the toilet and stuck blue tack on the walls. I remember very little except bumping into walls.
I am able to take Zopiclone without an unwanted night time pantomime!
Agree with what everyone has said, need a very slow weaning off period from the Dopamine Agonists meds
If the Neurologist suggests another dopamine agonists I would steer clear of Pramipexole and the only one I woukd ever consider is the 1mg Neupro patch but it's expensive so they like to have you on the pill form
You may find Gabapentin or Pregablin more suitable
Make sure you get your ferritin iron levels tested it needs to be over 75 preferably around 100 soget the actual number and most importantly educate yourselfon the condition most doctors haven't a clue about RLS.
Also do you take any medications for anything else as many can worsen /trigger RLS
I’m just realising how ignorant I have been to this point! I am so grateful to have found this site, but really alarmed to find that so many of us are suffering and there doesn’t appear to be any support other than each other. That’s just not right. Thank you for being there. Xx
We all have to learn. When I first found this site several years ago I didn't know the first thing about RLS except my mother and grandmother had it (and now my daughter ).The wonderful members on here helped me and in turn we are there for new members. Go to rls-uk.org for reliable information and ask away on here x
That sounds awful, you must have been terrified..Read up what you can on RLS and instruct your doctor, unfortunately we really have to help ourselves. I found recently that my antidepressant was causing my stomach to bleed! I just had to study the leaflet to find out. I do hope the neurologist can find you the appropriate medication.
Your problem with acid reflux (on a grand scale) interests me. I had rls at about 10 or 15 years old I also had some indigestion that was described as heartburn. The heartburn was a warning that my RLS was going to give trouble that night. In those days I drank a teaspoon of sodium bicarbonate in a glass of warm water before bed and the heartburn disappeared and the RLS didn't visit me. That was fine until wiser people told me I was killing my heart with all that sodium. Eventually we (our family all had the same experience) found an anti indigestion agent called Quick-Eze so until I was about 55 I had a quick-Eze tablet before bed and the RLS was kept mostly at bay. At about that age I started needing 2 or three tablets per night and then they stopped working and my situation rapidly deteriorated.
Perhaps you could try the sodium bicarbonate just to see if it would help.
Be careful your GP might give you a antacid medicine that actually makes the RLS worse. One I can't remember the name reduce the body absorbtion of iron and magnesium. Ypur body needs both these to avoid RLS. If you decide to take any medicine or supplement for anything google it and read all the boring fine print to make sure it doesnt have a bad RLS reputation.
The best thing to do with RLS is to try lots of relief strategies until you find something that helps you. There seem to be hundreds of variations of RLS and each one needs a different fix.
Hi, my reflux only started once I had been taking ropinerole for a couple of weeks. It first started as spontaneous vomiting, always at night & always a couple of hours after I’d taken ropinerole.
The doctor prescribed 20mg omeprozole daily. More recently I’ve woken occasionally because either my mouth has filled with acid or I have heartburn, or I can feel bubbling in my chest, just below my throat. After last weeks disaster the GP has now changed my medication from omeprozole to Landoprazole 30mg.
So sorry to hear about you experience. You have had lots of good advice on here, the only other thing I would add is to also think about possible triggers of RLS and even if you don't eliminate them for all of the time you may want to during particularly bad RLS periods. The main culprits are alcohol, nicotine and caffeine (although there are numerous contributions on this site by people saying a coffee helps their RLS symptoms). Others might include gluten, dairy, sugar, chocolate, and MSG. Good luck and I hope things get better for you soon.
PS, from personal experience and from hearing other people comment on different forums, be careful with the omeprazole as well. Can lead to other major problems and can be hard to withdrawal from if and when necessary to do so.
My heart goes out to you! My husband has similar sleeping problems but not to the extreme of yours. It seems like the drug you take for the rls should not be quit cold turkey. I am certainly not a doctor but your horrible experience seems like you need to talk to someone that has the understanding of rls. My husband goes to the Veteran's Administration in the U.S. and one of the nurses in the sleep clinic told us that lots of doctors don't understand the sleep problems and how to treat them. I don't think they spend lots of time teaching about sleep apnea, rls, etc. Its a fairly new discovery in the medical field. But I bet people have had these problems for centuries. I sure hope you can find someone with understanding. And also get some restful sleep. 😊
i have been on the ropinirole 2mg for a year. I take it about 8:45pm at night for a 10:30pm lights out and go to sleep. Most nights it works fine. My neurologist has also subscribed gabapentin and wants me to slowly move away from the ropinirole due to its side effects. I use the gabapentin on nights when the ropinirole is not enough, like after an evening walk with my wife. The gabapentin really works, makes me tired and I sleep heavier, but also I feel it for the first hour or two the next morning, lethargic.
Just read your post and my heart goes out to you it’s 4am and I’m writing so you can guess the rest I just want to add if it helps that you can get zopiclone half strength or 3,75mg I use them doesn’t make you feel as woozy next am good luck
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